WorldWideScience

Sample records for saltwater angler registry

  1. Recreational Angler Attitudes

    Data.gov (United States)

    National Oceanic and Atmospheric Administration, Department of Commerce — NOAA Fisheries implemented a national survey of saltwater recreational anglers beginning in February 2013. The survey was implemented in six regions including the...

  2. 77 FR 37387 - Proposed Information Collection; Comment Request; Understanding Recreational Angler Attitudes and...

    Science.gov (United States)

    2012-06-21

    ... DEPARTMENT OF COMMERCE National Oceanic and Atmospheric Administration Proposed Information Collection; Comment Request; Understanding Recreational Angler Attitudes and Preferences for Saltwater... survey will be to understand the range of attitudes, preferences, and concerns that recreational anglers...

  3. 2009 S. Atlantic SPCE angler pilot survey

    Data.gov (United States)

    National Oceanic and Atmospheric Administration, Department of Commerce — This survey collected information to assess the economic value from an anglers perspective of saltwater charter and private boat fishing for selected species in...

  4. Using multinomial logistic regression analysis to understand anglers willingness to substitute other fishing locations

    Science.gov (United States)

    Woo-Yong Hyun; Robert B. Ditton

    2007-01-01

    The concept of recreation substitutability has been a continuing research topic for outdoor recreation researchers. This study explores the relationships among variables regarding the willingness to substitute one location for another location. The objectives of the study are 1) to ascertain and predict the extent to which saltwater anglers were willing to substitute...

  5. License Address List

    Data.gov (United States)

    National Oceanic and Atmospheric Administration, Department of Commerce — Address list generated from National Saltwater Angler Registry. Used in conjunction with an address-based sample as per survey design.

  6. Recreational Swordfish (Xiphias gladius Fishery: Angler Practices in South Florida (USA

    Directory of Open Access Journals (Sweden)

    Justin Lerner

    2017-10-01

    Full Text Available The management of highly migratory species (HMS is a complex domestic and international system that was initially established to regulate HMS taken in commercial fisheries in the Atlantic Ocean. For managing HMS taken in recreational fisheries, the authority and the data required is lacking and remains to be stipulated by regulating bodies. In the United States, Florida saltwater anglers target various HMS, but swordfish (Xiphias gladius is a favorite among anglers. The recreational swordfish fishery off the Southeast Florida coast has experienced resurgence in recent years, with directed tournaments resuming in 2001 after being absent almost 20 years. Today, South Florida supports the largest group of recreational swordfish anglers in the world. Despite the increasing popularity and interest, little data is available describing the recreational swordfish fishery and its socio-economic aspects in South Florida. This study aimed to compile, describe, and identify the demographics, fishing tactics, costs, and fishery management perceptions of recreational swordfish anglers in South Florida based on nonprobability purposive sampling organized through the Southeast Swordfish Club (SESC. The sample size (n = 38 represented about 16–38% of the SESC members and between 6% and 8% of the recreational anglers that actively targeted swordfish in South Florida during the time of the survey. We acknowledge the sample size was small (n = 38, but believe the study encompassed the most active swordfish anglers given their knowledge, expertise, and connection with the fishery in terms of participants, fishing effort, and fishing techniques. As such, it is highly probable that a large portion of the recreational swordfish angling population was represented by members of the SESC in terms of swordfishing gear, techniques, and socio-economics, which reduced apparent bias in the study. Overall, the annual income of recreational swordfish anglers in 2007 ranged

  7. Luring anglers to enhance fisheries

    Science.gov (United States)

    Martin, Dustin R.; Pope, Kevin L.

    2011-01-01

    Current fisheries management is, unfortunately, reactive rather than proactive to changes in fishery characteristics. Furthermore, anglers do not act independently on waterbodies, and thus, fisheries are complex socio-ecological systems. Proactive management of these complex systems necessitates an approach-adaptive fisheries management-that allows learning to occur simultaneously with management. A promising area for implementation of adaptive fisheries management is the study of luring anglers to or from specific waterbodies to meet management goals. Purposeful manipulation of anglers, and its associated field of study, is nonexistent in past management. Evaluation of different management practices (i.e., hypotheses) through an iterative adaptive management process should include both a biological and sociological survey to address changes in fish populations and changes in angler satisfaction related to changes in management. We believe adaptive management is ideal for development and assessment of management strategies targeted at angler participation. Moreover these concepts and understandings should be applicable to other natural resource users such as hunters and hikers.

  8. Angler satisfaction in South Dakota

    Science.gov (United States)

    Henderson, Kjetil R.; Gigliotti, Larry M.

    2015-01-01

    Many industries use satisfaction measures to evaluate performance. The South Dakota Department of Game, Fish and Parks identified satisfaction as one of their performance measures for evaluating fishing in South Dakota. In fisheries management, the perspectives’ of license buyers are valuable to determine if management activities are providing the benefits anticipated by biologists. Surveys of South Dakota anglers are conducted to better understand licensees in order to promote satisfying angling experiences. Internet surveys were distributed to all license buyers providing email addresses in 2011 and 2012. Angler satisfaction was analyzed by angler type (demographics and fishing characteristics) to further clarify performance measures. Most anglers (> 70%) were satisfied with their angling experiences. Nonresidents expressed higher levels of satisfaction with fishing in South Dakota in 2011 and 2012 than residents. Anglers’ rating of fishing quality was more strongly correlated with satisfaction than their reported number of fish harvested, which suggests that strategies to influence angler perceptions and expectations can also be employed to influence satisfaction (in addition to techniques influencing fish populations). This research further integrates sociological data into South Dakota fisheries management processes.

  9. Self-confidence of anglers in identification of freshwater sport fish

    Science.gov (United States)

    Chizinski, C.J.; Martin, D. R.; Pope, Kevin L.

    2014-01-01

    Although several studies have focused on how well anglers identify species using replicas and pictures, there has been no study assessing the confidence that can be placed in angler's ability to identify recreationally important fish. Understanding factors associated with low self-confidence will be useful in tailoring education programmes to improve self-confidence in identifying common species. The purposes of this assessment were to quantify the confidence of recreational anglers to identify 13 commonly encountered warm water fish species and to relate self-confidence to species availability and angler experience. Significant variation was observed in anglers self-confidence among species and levels of self-declared skill, with greater confidence associated with greater skill and with greater exposure. This study of angler self-confidence strongly highlights the need for educational programmes that target lower skilled anglers and the importance of teaching all anglers about less common species, regardless of skill level.

  10. Competitive bass anglers: a new concern in sports medicine.

    Science.gov (United States)

    Read, Connor R; Watson, Shawna L; Perez, Jorge L; Estes, A Reed

    2017-09-01

    Competitive bass angling involves sport fishing against other anglers while targeting a species of fish known as the black basses. Due to the rapidly growing popularity of high school competitive bass angling in Alabama and the nature of the casting motion similar to that of overhead athletes, we sought to examine the prevalence of sports type injuries in this population. In spring 2016, an anonymous survey was distributed across two large scale competitive high school fishing tournaments, allowing for a broad sampling of anglers throughout the state of Alabama. Survey items included demographic information, relevant past medical history, and various pains associated with the shoulder, elbow and wrist. Results were recorded and analyzed electronically using Microsoft Excel and IBM SPSS statistical software. A total of 257 surveys were recorded. The response rate was 61%. The mean age of participating anglers was 15 ± 1.61 years. The majority (42%) of anglers fished year round. On average, anglers casted nearly 1,000 more times while competing versus fishing recreationally. Approximately 15% of anglers experienced shoulder, elbow, and wrist pain. The most common factors associated with pain included higher tournament cast counts, number of competitive years, number of tournaments/year, number of tournaments, and use of light weight lures. A large portion of high school competitive anglers experience upper extremity pain. Knowledge of angling factors associated with pain allow for the creation of a modifiable routine to help reduce pain in affected anglers and prevent pain in healthy anglers.

  11. Billfish Angler Survey

    Data.gov (United States)

    National Oceanic and Atmospheric Administration, Department of Commerce — The Billfish Angler Survey provides estimates of billfish angling activities in the Pacific and Indian Oceans. This collection of recreational billfish catch and...

  12. Community fisheries in eastern South Dakota: Angler demographics, use, and factors influencing satisfaction

    Science.gov (United States)

    Greiner, Michael J.; Lucchesi, David O.; Chipps, Steven R.; Gigliotti, Larry M.

    2016-01-01

    We surveyed anglers on five community fishing lakes near Brookings, South Dakota to assess angler use and satisfaction. The community lakes attracted younger anglers when compared to statewide and national averages. Overall, satisfaction was generally high (74%) among anglers fishing community lakes. Logistic regression analysis showed that harvest rate, anglers targeting trout, familiarity with the lake, adults fishing with children, and fishing during open water periods were significantly related to angler satisfaction. Angler parties consisting of adults fishing with children were 1.7 times more likely to respond as “satisfied” compared with adults-only angler groups. Fishing opportunities provided by community lakes can enhance participation by younger anglers while simultaneously providing family-oriented recreation (i.e., adults fishing with children) that enhances trip satisfaction.

  13. Saltwater intrusion monitoring in Florida

    Science.gov (United States)

    Prinos, Scott T.

    2016-01-01

    Florida's communities are largely dependent on freshwater from groundwater aquifers. Existing saltwater in the aquifers, or seawater that intrudes parts of the aquifers that were fresh, can make the water unusable without additional processing. The quality of Florida's saltwater intrusion monitoring networks varies. In Miami-Dade and Broward Counties, for example, there is a well-designed network with recently constructed short open-interval monitoring wells that bracket the saltwater interface in the Biscayne aquifer. Geochemical analyses of water samples from the network help scientists evaluate pathways of saltwater intrusion and movement of the saltwater interface. Geophysical measurements, collected in these counties, aid the mapping of the saltwater interface and the design of monitoring networks. In comparison, deficiencies in the Collier County monitoring network include the positioning of monitoring wells, reliance on wells with long open intervals that when sampled might provide questionable results, and the inability of existing analyses to differentiate between multiple pathways of saltwater intrusion. A state-wide saltwater intrusion monitoring network is being planned; the planned network could improve saltwater intrusion monitoring by adopting the applicable strategies of the networks of Miami-Dade and Broward Counties, and by addressing deficiencies such as those described for the Collier County network.

  14. Fish Consumption and Mercury Exposure among Louisiana Recreational Anglers

    DEFF Research Database (Denmark)

    Lincoln, Rebecca A; Shine, James P; Chesney, Edward J

    2011-01-01

    Background: Methylmercury (MeHg) exposure assessments among average fish consumers in the U.S. may underestimate exposures among U.S. subpopulations with high intakes of regionally specific fish. Objectives: We examined relationships between fish consumption, estimated mercury (Hg) intake......, and measured Hg exposure among one such potentially highly-exposed group, recreational anglers in Louisiana USA. Methods: We surveyed 534 anglers in 2006 using interviews at boat launches and fishing tournaments combined with an internet-based survey method. Hair samples from 402 of these anglers were...... collected and analyzed for total Hg. Questionnaires provided information on species-specific fish consumption over 3 months prior to the survey. Results: Anglers' median hair-Hg concentration was 0.81 µg/g (n=398; range: 0.02-10.7 µg/g), with 40% of participants above 1 µg/g, the level that approximately...

  15. Massachusetts Recreational Fishing Demand Survey

    Data.gov (United States)

    National Oceanic and Atmospheric Administration, Department of Commerce — Stated preference choice experiment data were collected in 2012 from Massachuestts saltwater recreational fishermen. Saltwater anglers fishing in Massachusetts (MA)...

  16. Fish consumption risk perception among anglers in an industrial urban area

    Science.gov (United States)

    Cherie LeBlanc Fisher; Lynne M. Westphal; Mario Longoni

    2010-01-01

    Over two summers, we conducted field interviews with anglers in the industrial Calumet Region of northwest Indiana and southeast Chicago. The data collected provide insight into how anglers assess the risks of eating the fish they catch. Some anglers practiced catch and release because of concerns about water pollution while others just did not eat fish. Those who ate...

  17. Influence of anglers' specializations on catch, harvest, and bycatch of targeted taxa

    Science.gov (United States)

    Pope, Kevin L.; Chizinski, Christopher J.; Wiley, Christopher L.; Martin, Dustin R.

    2016-01-01

    Fishery managers often use catch per unit effort (CPUE) of a given taxon derived from a group of anglers, those that sought said taxon, to evaluate fishery objectives because managers assume CPUE for this group of anglers is most sensitive to changes in fish taxon density. Further, likelihood of harvest may differ for sought and non-sought taxa if taxon sought is a defining characteristic of anglers’ attitude toward harvest. We predicted that taxon-specific catch across parties and reservoirs would be influenced by targeted taxon after controlling for number of anglers in a party and time spent fishing (combine to quantify fishing effort of party); we also predicted similar trends for taxon-specific harvest. We used creel-survey data collected from anglers that varied in taxon targeted, from generalists (targeting “anything” [no primary target taxa, but rather targeting all fishes]) to target specialists (e.g., anglers targeting largemouth bass Micropterus salmoides) in 19 Nebraska reservoirs during 2009–2011 to test our predictions. Taxon-specific catch and harvest were, in general, positively related to fishing effort. More importantly, we observed differences of catch and harvest among anglers grouped by taxon targeted for each of the eight taxa assessed. Anglers targeting a specific taxon had the greatest catch for that taxon and anglers targeting anything typically had the second highest catch for that taxon. In addition, anglers tended to catch more of closely related taxa and of taxa commonly targeted with similar fishing techniques. We encourage managers to consider taxon-specific objectives of target and non-target catch and harvest.

  18. Body burdens of polybrominated diphenyl ethers among urban anglers.

    Science.gov (United States)

    Morland, Kimberly B; Landrigan, Philip J; Sjödin, Andreas; Gobeille, Alayne K; Jones, Richard S; McGahee, Ernest E; Needham, Larry L; Patterson, Donald G

    2005-12-01

    Polybrominated diphenyl ethers (PBDEs) have been widely used in the United States and worldwide as flame retardants. Recent PBDE production figures show that worldwide use has increased. To determine whether fish consumption is a source of PBDE exposure for humans, a cross-sectional epidemiologic study of New York and New Jersey urban anglers was conducted during the summers of 2001-2003. Frequency of local fish consumption was assessed by questionnaire, and blood samples for PBDE analysis were collected from 94 anglers fishing from piers on the lower Hudson River and Newark Bay. We analyzed PBDEs by gas chromatography-isotope dilution-high-resolution mass spectrometry. The congeners found in anglers' serum at the highest concentrations were, by International Union of Pure and Applied Chemistry numbers, BDE-47, BDE-153, and BDE-99. Anglers reporting consumption of local fish had higher, but nonstatistically significantly different, concentrations of PBDEs than did anglers who did not eat local fish. For some congeners (BDE-100 and BDE-153), we observed moderate dose-response relationships between serum PBDE levels and frequency of reported fish intake. These findings suggest that consumption of locally caught fish is not a major route of human exposure for this study population.

  19. AKRO: Guided Angler Fish Landings

    Data.gov (United States)

    National Oceanic and Atmospheric Administration, Department of Commerce — Beginning in 2014, the the halibut Catch Sharing Plan (CSP) authorizes annual transfers of commercial halibut IFQ as guided angler fish (GAF) to charter halibut...

  20. 78 FR 60826 - Submission for OMB Review; Comment Request

    Science.gov (United States)

    2013-10-02

    ... the agency's understanding of California saltwater angler preferences relative to Pacific groundfish...); their attitudes and preferences regarding particular groundfish species and groundfish regulations; and angler demographics. The data collected will provide NMFS, as well as state agency partners such as the...

  1. Relationships among catch, angler catisfaction, and fish assemblage characteristics of an urban small impoundment fishery

    Science.gov (United States)

    Ivasauskas, Tomas J.; Xiong, Wilson N.; Engman, Augustin C.; Fischer, Jesse R.; Kwak, Thomas J.; Rundle, Kirk R.

    2017-01-01

    Urban fisheries provide unique angling opportunities for people from traditionally underrepresented demographics. Lake Raleigh is a 38-ha impoundment located on the North Carolina State University campus in Raleigh. Like many urban fisheries, little is known about angler use and satisfaction or how angling catch rate is related to fish availability in Lake Raleigh. We characterized the recreational fishery and fish assemblage with concurrent creel and boat electrofishing surveys over the course of one year. In total, 245 anglers were interviewed on 68 survey days. On average, anglers spent 1.7 h fishing per trip and caught 0.385 fish h –1. A large proportion of anglers (43.9%) targeted multiple species, whereas 36.5% targeted largemouth bass (Micropterus salmoides), 10.0% targeted panfish (i.e., sunfishes [Lepomis spp.] and crappies [Pomoxis spp.]), and 9.6% targeted catfish (Ameiurus spp. and Ictalurus spp.). Most anglers (69.4%) were satisfied with their experience, and overall satisfaction was unrelated to catch rate. Pulsed-DC boat electrofishing was conducted on 25 dates, and 617 fish were sampled. Angler catch rate was unrelated to electrofishing catch rate, implying that anglers' catch rate was independent of fish density or availability. Our results demonstrate that even minimally managed urban fisheries can provide high angler satisfaction, with limited dedication of management resources. Relationships Among Catch, Angler Satisfaction, and Fish Assemblage Characteristics of an Urban Small Impoundment Fishery (PDF Download Available). Available from: https://www.researchgate.net/publication/316636550_Relationships_Among_Catch_Angler_Satisfaction_and_Fish_Assemblage_Characteristics_of_an_Urban_Small_Impoundment_Fishery [accessed Aug 11, 2017].

  2. 78 FR 38297 - Proposed Information Collection; Comment Request; California Recreational Groundfish Survey

    Science.gov (United States)

    2013-06-26

    ... California saltwater angler preferences relative to Pacific groundfish. Pacific groundfish caught in...' recreational saltwater fishing activities in California (including groundfish); their attitudes and preferences... collected will provide NMFS, as well as state agency partners such as the California Department of Fish and...

  3. The effects of regional angling effort, angler behavior, and harvesting efficiency on landscape patterns of overfishing.

    Science.gov (United States)

    Hunt, Len M; Arlinghaus, Robert; Lester, Nigel; Kushneriuk, Rob

    2011-10-01

    We used a coupled social-ecological model to study the landscape-scale patterns emerging from a mobile population of anglers exploiting a spatially structured walleye (Sander vitreus) fishery. We systematically examined how variations in angler behaviors (i.e., relative importance of walleye catch rate in guiding fishing site choices), harvesting efficiency (as implied by varying degrees of inverse density-dependent catchability of walleye), and angler population size affected the depletion of walleye stocks across 157 lakes located near Thunder Bay (Ontario, Canada). Walleye production biology was calibrated using lake-specific morphometric and edaphic features, and angler fishing site choices were modeled using an empirically grounded multi-attribute utility function. We found support for the hypothesis of sequential collapses of walleye stocks across the landscape in inverse proportionality of travel cost from the urban residence of anglers. This pattern was less pronounced when the regional angler population was low, density-dependent catchability was absent or low, and angler choices of lakes in the landscape were strongly determined by catch rather than non-catch-related attributes. Thus, our study revealed a systematic pattern of high catch importance reducing overfishing potential at low and aggravating overfishing potential at high angler population sizes. The analyses also suggested that density-dependent catchability might have more serious consequences for regional overfishing states than variations in angler behavior. We found little support for the hypotheses of systematic overexploitation of the most productive walleye stocks and homogenized catch-related qualities among lakes sharing similar access costs to anglers. Therefore, one should not expect anglers to systematically exploit the most productive fisheries or to equalize catch rates among lakes through their mobility and other behaviors. This study underscores that understanding landscape

  4. Network analysis of a regional fishery: Implications for management of natural resources, and recruitment and retention of anglers

    Science.gov (United States)

    Martin, Dustin R.; Shizuka, Daizaburo; Chizinski, Christopher J.; Pope, Kevin L.

    2017-01-01

    Angler groups and water-body types interact to create a complex social-ecological system. Network analysis could inform detailed mechanistic models on, and provide managers better information about, basic patterns of fishing activity. Differences in behavior and reservoir selection among angler groups in a regional fishery, the Salt Valley fishery in southeastern Nebraska, USA, were assessed using a combination of cluster and network analyses. The four angler groups assessed ranged from less active, unskilled anglers (group One) to highly active, very skilled anglers (group Four). Reservoir use patterns and the resulting network communities of these four angler groups differed; the number of reservoir communities for these groups ranged from two to three and appeared to be driven by reservoir location (group One), reservoir size and its associated attributes (groups Two and Four), or an interaction between reservoir size and location (group Three). Network analysis is a useful tool to describe differences in participation among angler groups within a regional fishery, and provides new insights about possible recruitment of anglers. For example, group One anglers fished reservoirs closer to home and had a greater probability of dropping out if local reservoir access were restricted.

  5. Blood mercury levels among Ontario anglers and sport-fish eaters

    International Nuclear Information System (INIS)

    Cole, D.C.; Kearney, Jill; Sanin, L.H.; Leblanc, Alain; Weber, J.P.

    2004-01-01

    We conducted two surveys of Ontario (Canada) fishers: a stratified sample of licensed anglers in two Lake Ontario communities (anglers, n=232) and a shore and community-based sample in five Great Lakes' Areas of Concern (AOC eaters, n=86). Among the 176 anglers consuming their catch, the median number of sport-fish meals/year was 34.2 meals and 10.9, respectively, in two communities, with a mean blood total mercury level among these sport-fish consumers of 2.8 μg/L. The vast majority of fish eaten by AOC eaters was from Ontario waters (74%). For AOC eaters, two broad country-of-origin groups were assembled: Euro-Canadians (EC) and Asian-Canadians (AC). EC consumed a median of 174 total fish meals/year and had a geometric mean total mercury level of 2.0 μg/L. Corresponding AC figures were 325 total fish meals/year and 7.9 μg/L. Overall, mercury levels among AOC eaters were higher than in many other Great Lakes populations but lower than in populations frequently consuming seafood. In multivariate models, mercury levels were significantly associated with levels of fish consumption among both anglers and EC AOC eaters. Given the nutritional and social benefits of fish consumption, prudent species and location choices should continue

  6. Variation in angler distribution and catch rates of stocked rainbow trout in a small reservoir

    Science.gov (United States)

    Harmon, Brian S.; Martin, Dustin R.; Chizinski, Christopher J.; Pope, Kevin L.

    2018-01-01

    We investigated the spatial and temporal relationship of catch rates and angler party location for two days following a publicly announced put-and-take stocking of rainbow trout (Oncorhynchus mykiss). Catch rates declined with time since stocking and distance from stocking. We hypothesized that opportunity for high catch rates would cause anglers to fish near the stocking location and disperse with time, however distance between angler parties and stocking was highly variable at any given time. Spatially explicit differences in catch rates can affect fishing quality. Further research could investigate the variation between angler distribution and fish distribution within a waterbody.

  7. Minnesota anglers' fisheries-related value orientations and their stewardship of fish resources

    Science.gov (United States)

    Bruskotter, J.T.; Fulton, D.C.

    2008-01-01

    Research on natural resource-related values and value orientations has grown substantially over the past decade. However, existing studies have focused almost exclusively on value orientations related to wildlife and forests. This article reports data from two mail surveys of Minnesota anglers used to develop scales for measuring fisheries-related value orientations. We report results of regression analyses examining the relationship between anglers' value orientations and norms concerning fisheries stewardship and the use of technological aids to angling. Results indicate 10 items reliably measure three value orientations we termed utilitarianism, dominance, and protectionism. Regression analyses suggest anglers' stewardship norms are influenced by all three value orientation types, while support for the use of technological aids was related with protectionism and utilitarianism, but not dominance. Results suggest anglers' fisheries-related value orientations cannot be adequately captured using single domain scales. Implications for the study of natural resources-related value orientations are discussed. Copyright ?? Taylor & Francis Group, LLC.

  8. Human health exposure factor estimates based upon a creel/angler survey of the lower Passaic River (part 3).

    Science.gov (United States)

    Ray, Rose; Craven, Valerie; Bingham, Matthew; Kinnell, Jason; Hastings, Elizabeth; Finley, Brent

    2007-03-15

    The results of an analysis of site-specific creel and angler information collected for the lower 6 miles of the Passaic River in Newark, NJ (Study Area), demonstrate that performing a site-specific creel/angler survey was essential to capture the unique characteristics of the anglers using the Study Area. The results presented were developed using a unique methodology for calculating site-specific, human exposure estimates from data collected in this unique urban/industrial setting. The site-specific human exposure factors calculated and presented include (1) size of angler population and fish-consuming population, (2) annual fish consumption rate, (3) duration of anglers' fishing careers, (4) cooking methods for the fish consumed, and (5) demographic information. Sensitivity and validation analyses were performed, and results were found to be useful for performing a site-specific, human health risk assessment. It was also concluded that site-specific exposure factor values are preferable to less representative "default values." The results of the analysis showed that the size of the angling population at the Study Area is estimated to range from 154 to 385 anglers, based on different methods of matching intercepts with anglers. Thirty-four anglers were estimated to have consumed fish; 37 people consumed fish from the river. The fish consumption rate for anglers using this area was best represented as 0.42 g/day for the central tendency and 1.8 g/day for the 95th percentile estimates. Anglers fishing at the river have relatively short fishing careers with a median of 0.9 yr, an average of 1.5 yr, and a 95th percentile of 4.8 yr. Consuming anglers tend to fry the fish they caught. The demographics of anglers who consume fish do not appear to differ substantially from those who do not, with no indication of a subsistence angling population.

  9. Muskie Lunacy: does the lunar cycle influence angler catch of muskellunge (Esox masquinongy)?

    Science.gov (United States)

    Vinson, Mark R; Angradi, Ted R

    2014-01-01

    We analyzed angling catch records for 341,959 muskellunge (Esox masquinongy) from North America to test for a cyclic lunar influence on the catch. Using periodic regression, we showed that the number caught was strongly related to the 29-day lunar cycle, and the effect was consistent across most fisheries. More muskellunge were caught around the full and new moon than at other times. At night, more muskellunge were caught around the full moon than the new moon. The predicted maximum relative effect was ≈5% overall. Anglers fishing exclusively on the peak lunar day would, on average, catch 5% more muskellunge than anglers fishing on random days. On some lakes and at night, the maximum relative effect was higher. We obtained angler effort data for Wisconsin, Mille Lacs (MN), and Lake Vermilion (MN). For Lake Vermilion there was a significant effect of the lunar cycle on angler effort. We could therefore not conclude that the lunar effect on catch was due to an effect on fish behavior alone. Several factors affected the amount of variation explained by the lunar cycle. The lunar effect was stronger for larger muskellunge (>102 cm) than for smaller fish, stronger in midsummer than in June or October, and stronger for fish caught at high latitudes (>48°N) than for fish caught further south. There was no difference in the lunar effect between expert and novice muskellunge anglers. We argue that this variation is evidence that the effect of the lunar cycle on catch is mediated by biological factors and is not due solely to angler effort and reflects lunar synchronization in feeding. This effect has been attributed to variation among moon phases in lunar illumination, but our results do not support that hypothesis for angler-caught muskellunge.

  10. The importance of environmental quality and catch potential to fishing site selection by freshwater anglers in Mississippi

    Science.gov (United States)

    Schramm, H.L.; Gerard, P.D.; Gill, D.A.

    2003-01-01

    We measured the importance of 24 fishing site attributes to Mississippi freshwater anglers. Factor analysis identified four multiattribute factors as important in the selection of fishing location: CLEAN ENVIRONMENT CATCH, COST AND HARVEST and AMENITIES AND SAFETY. In general, the importance of site selection factors differed little among anglers grouped by preferred type of fish, preferred fishing location (lakes and reservoirs, rivers and streams, ponds, or reservoir tailwaters), usual manner of fishing (engine-powered boat, nonpowered boat, or shore), or change in fishing frequency. COST AND HARVEST was more important to anglers with high harvest orientations. We found low correlations between site selection factor importance scores and angler age, fishing frequency, fishing expenditures, or fishing motivation factors. We suggest that the general lack of differences in site selection factors among angler groups indicates that management strategies to improve fishing site attributes should benefit all angler groups. Clean fishing environments and awareness of the availability of desired sport fishes were "very" or "extremely" important to fishing site selection by more than 70% of Mississippi freshwater anglers and should be priority management objectives.

  11. Using the internet to understand angler behavior in the information age

    Science.gov (United States)

    Martin, Dustin R.; Pracheil, Brenda M.; DeBoer, Jason A.; Wilde, Gene R.; Pope, Kevin L.

    2012-01-01

    Declining participation in recreational angling is of great concern to fishery managers because fishing license sales are an important revenue source for protection of aquatic resources. This decline is frequently attributed, in part, to increased societal reliance on electronics. Internet use by anglers is increasing and fishery managers may use the Internet as a unique means to increase angler participation. We examined Internet search behavior using Google Insights for Search, a free online tool that summarizes Google searches from 2004 to 2011 to determine (1) trends in Internet search volume for general fishing related terms and (2) the relative usefulness of terms related to angler recruitment programs across the United States. Though search volume declined for general fishing terms (e.g., fishing, fishing guide), search volume increased for social media and recruitment terms (e.g., fishing forum, family fishing) over the 7-year period. We encourage coordinators of recruitment programs to capitalize on anglers’ Internet usage by considering Internet search patterns when creating web-based information. Careful selection of terms used in web-based information to match those currently searched by potential anglers may help to direct traffic to state agency websites that support recruitment efforts.

  12. Reasons anglers did not respond to an internet survey and evaluation of data quality

    Science.gov (United States)

    Gigliotti, Larry M.; Henderson, Kjetil R.

    2015-01-01

    Natural resource management agencies have traditionally used statewide mail surveys to gather information from anglers, but cost savings and faster returns occur using the internet. This study examined mail or internet fishery survey return rates and associated data by license type of South Dakota resident anglers. Junior anglers (ages 16-18; Junior Combination license) had the lowest internet and mail survey return rates (20% and 28%, respectively), followed by adult anglers (ages 19-64; Adult Fishing and Adult Combination licenses; 30% and 39%, respectively), and senior anglers (ages 65+; Senior Fishing and Senior Combination licenses; 42% and 66%, respectively). The three age groups were significantly different on three email use characteristics (shared email, frequency of use, and comfort level). The primary reason for not responding to the internet survey was not receiving or noticing the email request, and secondarily, being too busy to respond. Although having a relatively low response rate, data collected by the internet compared to follow-up mail surveys of internet non-respondents were similar.

  13. Marine angler expenditures 2006 (NCEI Accession 0145343)

    Data.gov (United States)

    National Oceanic and Atmospheric Administration, Department of Commerce — Angler expenditures for their most recent trip in 2006, by fishing mode - for-hire, private boat, shore. Includes categories such as bait, ice, fuel, lodging, meals,...

  14. Origins and delineation of saltwater intrusion in the Biscayne aquifer and changes in the distribution of saltwater in Miami-Dade County, Florida

    Science.gov (United States)

    Prinos, Scott T.; Wacker, Michael A.; Cunningham, Kevin J.; Fitterman, David V.

    2014-01-01

    Intrusion of saltwater into parts of the shallow karst Biscayne aquifer is a major concern for the 2.5 million residents of Miami-Dade County that rely on this aquifer as their primary drinking water supply. Saltwater intrusion of this aquifer began when the Everglades were drained to provide dry land for urban development and agriculture. The reduction in water levels caused by this drainage, combined with periodic droughts, allowed saltwater to flow inland along the base of the aquifer and to seep directly into the aquifer from the canals. The approximate inland extent of saltwater was last mapped in 1995. An examination of the inland extent of saltwater and the sources of saltwater in the aquifer was completed during 2008–2011 by using (1) all available salinity information, (2) time-series electromagnetic induction log datasets from 35 wells, (3) time-domain electromagnetic soundings collected at 79 locations, (4) a helicopter electromagnetic survey done during 2001 that was processed, calibrated, and published during the study, (5) cores and geophysical logs collected from 8 sites for stratigraphic analysis, (6) 8 new water-quality monitoring wells, and (7) analyses of 69 geochemical samples. The results of the study indicate that as of 2011 approximately 1,200 square kilometers (km2) of the mainland part of the Biscayne aquifer were intruded by saltwater. The saltwater front was mapped farther inland than it was in 1995 in eight areas totaling about 24.1 km2. In many of these areas, analyses indicated that saltwater had encroached along the base of the aquifer. The saltwater front was mapped closer to the coast than it was in 1995 in four areas totaling approximately 6.2 km2. The changes in the mapped extent of saltwater resulted from improved spatial information, actual movement of the saltwater front, or a combination of both. Salinity monitoring in some of the canals in Miami-Dade County between 1988 and 2010 indicated influxes of saltwater, with maximum

  15. Fishing for Northern Pike in Minnesota: A comparison of anglers and dark house spearers

    Science.gov (United States)

    Schroeder, Susan A.; Fulton, David C.

    2014-01-01

    In order to project fishing effort and demand of individuals targeting Northern Pike Esox lucius in Minnesota, it is important to understand the catch orientations, management preferences, and site choice preferences of those individuals. Northern Pike are specifically targeted by about 35% of the approximately 1.5 million licensed anglers in Minnesota and by approximately 14,000–15,000 dark house spearers. Dark house spearing is a traditional method of harvesting fish through the ice in winter. Mail surveys were distributed to three research strata: anglers targeting Northern Pike, dark house spearing license holders spearing Northern Pike, and dark house spearing license holders angling for Northern Pike. Dark house spearers, whether spearing or angling, reported a stronger orientation toward keeping Northern Pike than did anglers. Anglers reported a stronger orientation toward catching large Northern Pike than did dark house spearers when spearing or angling. Northern Pike regulations were the most important attribute affecting site choice for respondents in all three strata. Models for all strata indicated a preference for lakes without protected slot limits. However, protected slot limits had a stronger negative influence on lake preference for dark house spearing licensees (whether spearing or angling) than for anglers.

  16. Conjunctive Management of Multi-Aquifer System for Saltwater Intrusion Mitigation

    Science.gov (United States)

    Tsai, F. T. C.; Pham, H. V.

    2015-12-01

    Due to excessive groundwater withdrawals, many water wells in Baton Rouge, Louisiana experience undesirable chloride concentration because of saltwater intrusion. The study goal is to develop a conjunctive management framework that takes advantage of the Baton Rouge multi-aquifer system to mitigate saltwater intrusion. The conjunctive management framework utilizes several hydraulic control techniques to mitigate saltwater encroachment. These hydraulic control approaches include pumping well relocation, freshwater injection, saltwater scavenging, and their combinations. Specific objectives of the study are: (1) constructing scientific geologic architectures of the "800-foot" sand, the "1,000-foot" sand, the "1,200-foot" sand, the "1,500-foot" sand, the "1,700-foot" sand, and the "2,000-foot" sand, (2) developing scientific saltwater intrusion models for these sands. (3) using connector wells to draw native groundwater from one sand and inject to another sand to create hydraulic barriers to halt saltwater intrusion, (4) using scavenger wells or well couples to impede saltwater intrusion progress and reduce chloride concentration in pumping wells, and (5) reducing cones of depression by relocating and dispersing pumping wells to different sands. The study utilizes optimization techniques and newest LSU high performance computing (HPC) facilities to derive solutions. The conjunctive management framework serves as a scientific tool to assist policy makers to solve the urgent saltwater encroachment issue in the Baton Rouge area. The research results will help water companies as well as industries in East Baton Rouge Parish and neighboring parishes by reducing their saltwater intrusion threats, which in turn would sustain Capital Area economic development.

  17. 77 FR 5751 - Marine Recreational Fisheries of the United States; National Saltwater Angler Registry and State...

    Science.gov (United States)

    2012-02-06

    ... Fisheries, Fishing, Fishing vessels, Statistics. Dated: February 1, 2012. Alan D. Risenhoover, Acting Deputy.... 600.1416: a. Revise paragraphs (a), (b)(1), (c), introductory text (d) and (d)(1); and b. Add...

  18. 77 FR 42189 - Marine Recreational Fisheries of the United States; National Saltwater Angler Registry and State...

    Science.gov (United States)

    2012-07-18

    ... Exempted State designation; allow the U.S. Virgin Islands to be designated as an Exempted State under the... or registration requirements to be eligible for Exempted State designation; (3) allow the U.S. Virgin... so small that exclusion of this group from a sample will not bias survey results. Comment: One state...

  19. Peer pressure on the riverbank: Assessing catch-and-release anglers' willingness to sanction others' (bad) behavior.

    Science.gov (United States)

    Guckian, Meaghan L; Danylchuk, Andy J; Cooke, Steven J; Markowitz, Ezra M

    2018-08-01

    Given the well-documented impacts of angler behavior on the biological fitness of angled and released fish, optimizing the conservation value of catch-and-release angling hinges on the extent to which anglers are willing to adopt recommended best practices and refrain from harmful ones. One potentially powerful mechanism underlying adoption of best practices is the social pressure anglers can apply to one another to enforce community norms and values. Past work in other domains demonstrates that forms of interpersonal communication-including social sanctioning-can foster context-appropriate social norms and increase cooperative behavior; yet to date, little research has examined these dynamics in the context of species conservation. We conducted in-person and online surveys to explore the role of social sanctioning in the context of an internationally renowned wild steelhead (Oncorhynchus mykiss) fishery in British Columbia, Canada. We investigated how diverse social-psychological and demographic factors influence anglers' past and future sanctioning propensity. Results highlight that perceived capacity to influence the angling practices of others and professed concerns about one's own reputation were strongly predictive of both past and future sanctioning. Furthermore, while anglers reported relatively low-levels of past sanctioning behavior, most anglers simultaneously expressed a strong desire to sanction others in the future. Identifying ways to increase the social desirability and visibility of sanctioning actions could assist resource managers in promoting adoption and maintenance of best practices. More broadly, our findings underscore a significant yet underappreciated role for wildlife users and enthusiasts in cultivating a shared conservation ethic to help ensure biological conservation. Copyright © 2018 Elsevier Ltd. All rights reserved.

  20. THE PRINCIPLES OF C&R IN OPINION OF ANGLERS FROM THE SUBCARPATHIAN REGION (POLAND

    Directory of Open Access Journals (Sweden)

    Łukasz Jurczyk

    2014-10-01

    Full Text Available The man exploits natural resources also when, at first sight, it is not necessary to maintain his existence. Angling, understood as a form of recreation or sport, associated with fish stocks usage, should be classified as that kind of activity. The prospect of significant reduction, or even extinction as a result of overharvest of many local populations of valuable species, cause that individual anglers more often recognizing their responsibility for the environment and leads towards increasing of environmental awareness and proper behavior in the fishery ground. One of the expressions of solicitude for the environment is, more and more popular among polish anglers, application to Catch and Release principles, which support the sustainable exploitation of fish fauna. In a survey conducted among anglers fishing in the Subcarpathian region (Poland, they were asked about the knowledge and approach to chosen C&R rules.

  1. Oklahoma’s recent earthquakes and saltwater disposal

    Science.gov (United States)

    Walsh, F. Rall; Zoback, Mark D.

    2015-01-01

    Over the past 5 years, parts of Oklahoma have experienced marked increases in the number of small- to moderate-sized earthquakes. In three study areas that encompass the vast majority of the recent seismicity, we show that the increases in seismicity follow 5- to 10-fold increases in the rates of saltwater disposal. Adjacent areas where there has been relatively little saltwater disposal have had comparatively few recent earthquakes. In the areas of seismic activity, the saltwater disposal principally comes from “produced” water, saline pore water that is coproduced with oil and then injected into deeper sedimentary formations. These formations appear to be in hydraulic communication with potentially active faults in crystalline basement, where nearly all the earthquakes are occurring. Although most of the recent earthquakes have posed little danger to the public, the possibility of triggering damaging earthquakes on potentially active basement faults cannot be discounted. PMID:26601200

  2. Spraguea lophii (Microsporidia) parasitizing blackbellied angler (Lophius budegassa) and angler (L. piscatorius) in European Atlantic waters

    Science.gov (United States)

    Landa, Jorge; Cañás, Lucía

    2017-12-01

    Blackbellied angler (Lophius budegassa) and angler (L. piscatorius) are two important commercial species in the Bay of Biscay and the European fisheries infected by the microsporidian parasite Spraguea lophii. Samplings of both anglerfish were performed from a nine year time-series (2006-2014) from commercial fleet and bottom research surveys operating in southern Bay of Biscay and Galician waters (ICES Div. VIIIc and IXa2), Celtic Sea (Div. VIIh), south-western Ireland (Div. VIIj and VIIk), western Ireland and Porcupine Bank (Div. VIIb and VIIc). Length and sex of fish and presence or absence of the parasite were recorded. The prevalence by Spraguea was used to analyse the infection level. The role of each variable (fish length, fish sex, geographical area and year) and the interactions among them on the Spraguea prevalence were analyzed by using a binomial GLM. Area and fish length had a more relevant effect on the infestation of both anglerfish, while the impact of the year and fish sex was less evident. The Spraguea prevalence by area ranged between 11% and 52% in L. budegassa and between 39% and 66% in L. piscatorius. This is the first study in which the prevalence of this parasite in L. budegassa is analyzed in several areas and inter-annually compared. A non-linear relationship with a sharp increment of the prevalence with fish length was obtained in both anglerfish. The results were compared with those from the scarce previous studies and discussed.

  3. Insights into fisheries management practices: using the theory of planned behavior to explain fish stocking among a sample of Swiss anglers.

    Directory of Open Access Journals (Sweden)

    Eike von Lindern

    Full Text Available Using inadequate management tools often threatens the natural environment. This study focuses on the example of Swiss recreational fishermen (hereafter called "anglers" as recreational fisheries management stakeholders. In recreational fisheries, fish stocking conducted by anglers has been identified as one important factor associated with declining fish catches. We therefore aimed to a gain insights into why anglers want to maintain fish stocking and b identify entry points for interventions to promote more pro-ecological management practices. Results (N = 349 showed that the majority of anglers think very uncritically about stocking and that they frequently engage in it. We conclude that outcome expectancies and beliefs about risks, in combination with a lack of stocking success controls are the main reasons that anglers retain stocking measures. We suggest that providing anglers with direct experience and feedback about stocking success is suitable to change their intentions regarding stocking and their actual stocking behavior, and thus, to promote more pro-ecological management methods. From a more general perspective, the results of this study are likely to help improve pro-ecological ecosystem management in other domains where problems similar to those in recreational fisheries management might exist.

  4. Fatigue crack retardation of high strength steel in saltwater

    International Nuclear Information System (INIS)

    Tokaji, K.; Ando, Z.; Imai, T.; Kojima, T.

    1983-01-01

    A high strength steel was studied in 3 percent saltwater to investigate the effects of a corrosive environment and sheer thickness on fatigue crack propagation behavior following the application of a single tensile overload. Experiments were carried out under sinusoidally varying loads at a load ratio of 0 and frequency of 10 H /SUB z/ . A single tensile overload was found to cause delayed retardation, and the crack propagation rate at first increased, followed by fairly rapid decrease to a minimum value and then increased gradually to its steady-state value, just as it did in air. The overload affected zone size and the retardation cycles increased with decreasing sheet thickness, just as they did in air. However, the zone size and the cycles were larger in 3 percent saltwater than in air. Since the crack propagation rates through the overload affected zone were not affected by the test environment, the longer retardation cycles in 3 percent saltwater were attributed to an enlargement of the overload affected zone size. The crack propagation behavior following the application of a single tensile overload in 3 percent saltwater was well explained by the crack closure concept

  5. Comparative genome analyses reveal distinct structure in the saltwater crocodile MHC.

    Directory of Open Access Journals (Sweden)

    Weerachai Jaratlerdsiri

    Full Text Available The major histocompatibility complex (MHC is a dynamic genome region with an essential role in the adaptive immunity of vertebrates, especially antigen presentation. The MHC is generally divided into subregions (classes I, II and III containing genes of similar function across species, but with different gene number and organisation. Crocodylia (crocodilians are widely distributed and represent an evolutionary distinct group among higher vertebrates, but the genomic organisation of MHC within this lineage has been largely unexplored. Here, we studied the MHC region of the saltwater crocodile (Crocodylus porosus and compared it with that of other taxa. We characterised genomic clusters encompassing MHC class I and class II genes in the saltwater crocodile based on sequencing of bacterial artificial chromosomes. Six gene clusters spanning ∼452 kb were identified to contain nine MHC class I genes, six MHC class II genes, three TAP genes, and a TRIM gene. These MHC class I and class II genes were in separate scaffold regions and were greater in length (2-6 times longer than their counterparts in well-studied fowl B loci, suggesting that the compaction of avian MHC occurred after the crocodilian-avian split. Comparative analyses between the saltwater crocodile MHC and that from the alligator and gharial showed large syntenic areas (>80% identity with similar gene order. Comparisons with other vertebrates showed that the saltwater crocodile had MHC class I genes located along with TAP, consistent with birds studied. Linkage between MHC class I and TRIM39 observed in the saltwater crocodile resembled MHC in eutherians compared, but absent in avian MHC, suggesting that the saltwater crocodile MHC appears to have gene organisation intermediate between these two lineages. These observations suggest that the structure of the saltwater crocodile MHC, and other crocodilians, can help determine the MHC that was present in the ancestors of archosaurs.

  6. A value orientation approach to assess and compare climate change risk perception among trout anglers in Georgia, USA

    Science.gov (United States)

    Ramesh Paudyal; Neelam C. Poudyal; J.M. Bowker; Adrienne M. Dorison; Stanley J. Zarnoch; Gary T. Green

    2015-01-01

    Trout in Georgia could experience early impacts from climate change as the streams in the region are located at the southern most edge of their North American home range. This study surveyed trout anglers in Georgia to understand how anglers perceive the potential impact of climate change on trout, and whether and how their perception and response to declines in trout...

  7. Estimation of total catch of silver kob Argyrosomus inodorus by recreational shore-anglers in Namibia using a roving-roving creel survey

    DEFF Research Database (Denmark)

    Kirchner, C.H.; Beyer, Jan

    1999-01-01

    , using data taken during a survey from 1 October 1995 to 30 September 1996. Two different methods of estimating daily catch were tested by sampling the same population of anglers using a complete and an incomplete survey. The mean rate estimator, calculated by the ratio of the means with progressive......A statistical sampling method is described to estimate the annual catch of silver kob Agryrosomus indorus by recreational shore-anglers in Namibia. The method is based on the theory of progressive counts and on-site roving interviews of anglers, with catch counts and measurements at interception...

  8. Willingness to pay for non angler recreation at the lower Snake River reservoirs

    Science.gov (United States)

    McKean, J.R.; Johnson, D.; Taylor, R.G.; Johnson, Richard L.

    2005-01-01

    This study applied the travel cost method to estimate demand for non angler recreation at the impounded Snake River in eastern Washington. Net value per person per recreation trip is estimated for the full non angler sample and separately for camping, boating, water-skiing, and swimming/picnicking. Certain recreation activities would be reduced or eliminated and new activities would be added if the dams were breached to protect endangered salmon and steelhead. The effect of breaching on non angling benefits was found by subtracting our benefits estimate from the projected non angling benefits with breaching. Major issues in demand model specification and definition of the price variables are discussed. The estimation method selected was truncated negative binomial regression with adjustment for self selection bias.

  9. Socio-economic drivers of specialist anglers targeting the non-native European catfish (Silurus glanis in the UK.

    Directory of Open Access Journals (Sweden)

    E M Ann Rees

    Full Text Available Information about the socioeconomic drivers of Silurus glanis anglers in the UK were collected using questionnaires from a cross section of mixed cyprinid fisheries to elucidate human dimensions in angling and non-native fisheries management. Respondents were predominantly male (95%, 30-40 years of age with £500 per annum. The proportion of time spent angling for S. glanis was significantly related to angler motivations; fish size, challenge in catch, tranquil natural surroundings, escape from daily stress and to be alone were considered important drivers of increased time spent angling. Overall, poor awareness of: the risks and adverse ecological impacts associated with introduced S. glanis, non-native fisheries legislation, problems in use of unlimited ground bait and high fish stocking rates in angling lakes were evident, possibly related to inadequate training and information provided by angling organisations to anglers, as many stated that they were insufficiently informed.

  10. The Effects of Saltwater Intrusion to Flood Mitigation Project

    Science.gov (United States)

    Azida Abu Bakar, Azinoor; Khairudin Khalil, Muhammad

    2018-03-01

    The objective of this study is to determine the effects of saltwater intrusion to flood mitigation project located in the flood plains in the district of Muar, Johor. Based on the studies and designs carried out, one of the effective flood mitigation options identified is the Kampung Tanjung Olak bypass and Kampung Belemang bypass at the lower reaches of Sungai Muar. But, the construction of the Kampung Belemang and Tanjung Olak bypass, while speeding up flood discharges, may also increase saltwater intrusion during drought low flows. Establishing the dynamics of flooding, including replicating the existing situation and the performance with prospective flood mitigation interventions, is most effectively accomplished using computer-based modelling tools. The finding of this study shows that to overcome the problem, a barrage should be constructed at Sungai Muar to solve the saltwater intrusion and low yield problem of the river.

  11. Graphite Based Electrode for ECG Monitoring: Evaluation under Freshwater and Saltwater Conditions

    Directory of Open Access Journals (Sweden)

    Tharoeun Thap

    2016-04-01

    Full Text Available We proposed new electrodes that are applicable for electrocardiogram (ECG monitoring under freshwater- and saltwater-immersion conditions. Our proposed electrodes are made of graphite pencil lead (GPL, a general-purpose writing pencil. We have fabricated two types of electrode: a pencil lead solid type (PLS electrode and a pencil lead powder type (PLP electrode. In order to assess the qualities of the PLS and PLP electrodes, we compared their performance with that of a commercial Ag/AgCl electrode, under a total of seven different conditions: dry, freshwater immersion with/without movement, post-freshwater wet condition, saltwater immersion with/without movement, and post-saltwater wet condition. In both dry and post-freshwater wet conditions, all ECG-recorded PQRST waves were clearly discernible, with all types of electrodes, Ag/AgCl, PLS, and PLP. On the other hand, under the freshwater- and saltwater-immersion conditions with/without movement, as well as post-saltwater wet conditions, we found that the proposed PLS and PLP electrodes provided better ECG waveform quality, with significant statistical differences compared with the quality provided by Ag/AgCl electrodes.

  12. Potential for saltwater intrusion into the lower Tamiami aquifer near Bonita Springs, southwestern Florida

    Science.gov (United States)

    Shoemaker, W. Barclay; Edwards, K. Michelle

    2003-01-01

    A study was conducted to examine the potential for saltwater intrusion into the lower Tamiami aquifer beneath Bonita Springs in southwestern Florida. Field data were collected, and constant- and variable-density ground-water flow simulations were performed that: (1) spatially quantified modern and seasonal stresses, (2) identified potential mechanisms of saltwater intrusion, and (3) estimated the potential extent of saltwater intrusion for the area of concern. MODFLOW and the inverse modeling routine UCODE were used to spatially quantify modern and seasonal stresses by calibrating a constant-density ground-water flow model to field data collected in 1996. The model was calibrated by assuming hydraulic conductivity parameters were accurate and by estimating unmonitored ground-water pumpage and potential evapotranspiration with UCODE. Uncertainty in these estimated parameters was quantified with 95-percent confidence intervals. These confidence intervals indicate more uncertainty (or less reliability) in the estimates of unmonitored ground-water pumpage than estimates of pan-evaporation multipliers, because of the nature and distribution of observations used during calibration. Comparison of simulated water levels, streamflows, and net recharge with field data suggests the model is a good representation of field conditions. Potential mechanisms of saltwater intrusion into the lower Tamiami aquifer include: (1) lateral inland movement of the freshwater-saltwater interface from the southwestern coast of Florida; (2) upward leakage from deeper saline water-bearing zones through natural upwelling and upconing, both of which could occur as diffuse upward flow through semiconfining layers, conduit flow through karst features, or pipe flow through leaky artesian wells; (3) downward leakage of saltwater from surface-water channels; and (4) movement of unflushed pockets of relict seawater. Of the many potential mechanisms of saltwater intrusion, field data and variable

  13. Effects of climate change on saltwater intrusion at Hilton Head Island, SC. U.S.A.

    Science.gov (United States)

    Payne, Dorothy F.

    2010-01-01

    Sea‐level rise and changes in precipitation patterns may contribute to the occurrence and affect the rate of saltwater contamination in the Hilton Head Island, South Carolina area. To address the effects of climate change on saltwater intrusion, a threedimensional, finite‐element, variable‐density, solute‐transport model was developed to simulate different rates of sea‐level rise and variation in onshore freshwater recharge. Model simulation showed that the greatest effect on the existing saltwater plume occurred from reducing recharge, suggesting recharge may be a more important consideration in saltwater intrusion management than estimated rates of sea‐level rise. Saltwater intrusion management would benefit from improved constraints on recharge rates by using model‐independent, local precipitation and evapotranspiration data, and improving estimates of confining unit hydraulic properties.

  14. Reliability of sport fish consumption in the New York State Angler Cohort Study

    International Nuclear Information System (INIS)

    Li Qiang; Vena, J.E.; Swanson, M.K.

    2005-01-01

    This paper examines the reliability of sport fish consumption data from the New York State Angler Cohort Study (NYSACS). NYSACS is a prospective cohort study conducted among New York State registered sportsmen and fishermen. Sport fish consumption information for New York State waters including the Great Lakes between June 1990 and June 1991 were collected through self-administered questionnaires, Spouses of male anglers were asked to provide their husbands' fish consumption during the same time period. A short telephone interview after the cohort was ascertained was also conducted among about 100 study participants for the purpose of quality control. Percentage agreement, kappa, and weighted kappa were calculated to evaluate the reliability of the interview using spousal data and reinterview data. Overall, for the total fish consumption between June 1990 and June 1991, percentage agreement, kappa, and weighted kappa between spousal data and primary response were 67.28%, 0.5087, and 0.6157, respectively. For reinterview data, weighted kappa ranged from 0.4510 to 0.5285 for season-specific analysis and kappa ranged from 0.4615 to 0.7006 for fish species-specific analysis. Spouses may be a good source of proxy data for fish consumption. The reliability of sport fish consumption data for the NYSACS study is acceptable, suggesting that the food frequency measuring methods employed are a viable approach to obtain retrospective sport fish consumption data from sportsmen and subsistence anglers

  15. Effective use of surface-water management to control saltwater intrusion

    Science.gov (United States)

    Hughes, J. D.; White, J.

    2012-12-01

    The Biscayne aquifer in southeast Florida is susceptible to saltwater intrusion and inundation from rising sea-level as a result of high groundwater withdrawal rates and low topographic relief. Groundwater levels in the Biscayne aquifer are managed by an extensive canal system that is designed to control flooding, supply recharge to municipal well fields, and control saltwater intrusion. We present results from an integrated surface-water/groundwater model of a portion of the Biscayne aquifer to evaluate the ability of the existing managed surface-water control network to control saltwater intrusion. Surface-water stage and flow are simulated using a hydrodynamic model that solves the diffusive-wave approximation of the depth-integrated shallow surface-water equations. Variable-density groundwater flow and fluid density are solved using the Oberbeck--Boussinesq approximation of the three-dimensional variable-density groundwater flow equation and a sharp interface approximation, respectively. The surface-water and variable-density groundwater domains are implicitly coupled during each Picard iteration. The Biscayne aquifer is discretized into a multi-layer model having a 500-m square horizontal grid spacing. All primary and secondary surface-water features in the active model domain are discretized into segments using the 500-m square horizontal grid. A 15-year period of time is simulated and the model includes 66 operable surface-water control structures, 127 municipal production wells, and spatially-distributed daily internal and external hydrologic stresses. Numerical results indicate that the existing surface-water system can be effectively used in many locations to control saltwater intrusion in the Biscayne aquifer resulting from increases in groundwater withdrawals or sea-level rise expected to occur over the next 25 years. In other locations, numerical results indicate surface-water control structures and/or operations may need to be modified to control

  16. Bycatch, bait, anglers, and roads: quantifying vector activity and propagule introduction risk across lake ecosystems.

    Science.gov (United States)

    Drake, D Andrew R; Mandrak, Nicholas E

    2014-06-01

    Long implicated in the invasion process, live-bait anglers are highly mobile species vectors with frequent overland transport of fishes. To test hypotheses about the role of anglers in propagule transport, we developed a social-ecological model quantifying the opportunity for species transport beyond the invaded range resulting from bycatch during commercial bait operations, incidental transport, and release to lake ecosystems by anglers. We combined a gravity model with a stochastic, agent-based simulation, representing a 1-yr iteration of live-bait angling and the dynamics of propagule transport at fine spatiotemporal scales (i.e., probability of introducing n propagules per lake per year). A baseline scenario involving round goby (Neogobius melanostomus) indicated that most angling trips were benign; irrespective of lake visitation, anglers failed to purchase and transport propagules (benign trips, median probability P = 0.99912). However, given the large number of probability trials (4.2 million live-bait angling events per year), even the rarest sequence of events (uptake, movement, and deposition of propagules) is anticipated to occur. Risky trips (modal P = 0.00088 trips per year; approximately 1 in 1136) were sufficient to introduce a substantial number of propagules (modal values, Poisson model = 3715 propagules among 1288 lakes per year; zero-inflated negative binomial model = 6722 propagules among 1292 lakes per year). Two patterns of lake-specific introduction risk emerged. Large lakes supporting substantial angling activity experienced propagule pressure likely to surpass demographic barriers to establishment (top 2.5% of lakes with modal outcomes of five to 76 propagules per year; 303 high-risk lakes with three or more propagules, per year). Small or remote lakes were less likely to receive propagules; however, most risk distributions were leptokurtic with a long right tail, indicating the rare occurrence of high propagule loads to most waterbodies

  17. Distinction between saltwater drowning and freshwater drowning by assessment of sinus fluid on post-mortem computed tomography

    Energy Technology Data Exchange (ETDEWEB)

    Kawasumi, Yusuke; Sato, Yuki; Sato, Yumi; Ishibashi, Tadashi [Tohoku University Graduate School of Medicine, Department of Clinical Imaging, Sendai, Miyagi (Japan); Usui, Akihito; Daigaku, Nami; Hosokai, Yoshiyuki [Tohoku University Graduate School of Medicine, Department of Diagnostic Image Analysis, Sendai, Miyagi (Japan); Hayashizaki, Yoshie; Funayama, Masato [Tohoku University Graduate School of Medicine, Department of Forensic Medicine, Sendai, Miyagi (Japan)

    2016-04-15

    To evaluate the difference in sinus fluid volume and density between saltwater and freshwater drowning and diagnose saltwater drowning in distinction from freshwater drowning. Ninety-three drowning cases (22 saltwater and 71 freshwater) were retrospectively investigated; all had undergone post-mortem CT and forensic autopsy. Sinus fluid volume and density were calculated using a 3D-DICOM workstation, and differences were evaluated. Diagnostic performance of these indicators for saltwater drowning was evaluated using a cut-off value calculated by receiver operating characteristic (ROC) analysis. The median sinus fluid volume was 5.68 mL in cases of saltwater drowning (range 0.08 to 37.55) and 5.46 mL in cases of freshwater drowning (0.02 to 27.68), and the average densities were 47.28 (14.26 to 75.98) HU and 32.56 (-14.38 to 77.43) HU, respectively. While sinus volume did not differ significantly (p = 0.6000), sinus density was significantly higher in saltwater than freshwater drowning cases (p = 0.0002). ROC analysis for diagnosis of saltwater drowning determined the cut-off value as 37.77 HU, with a sensitivity of 77 %, specificity of 72 %, PPV of 46 % and NPV of 91 %. The average density of sinus fluid in cases of saltwater drowning was significantly higher than in freshwater drowning cases; there was no significant difference in the sinus fluid volume. (orig.)

  18. Distinction between saltwater drowning and freshwater drowning by assessment of sinus fluid on post-mortem computed tomography

    International Nuclear Information System (INIS)

    Kawasumi, Yusuke; Sato, Yuki; Sato, Yumi; Ishibashi, Tadashi; Usui, Akihito; Daigaku, Nami; Hosokai, Yoshiyuki; Hayashizaki, Yoshie; Funayama, Masato

    2016-01-01

    To evaluate the difference in sinus fluid volume and density between saltwater and freshwater drowning and diagnose saltwater drowning in distinction from freshwater drowning. Ninety-three drowning cases (22 saltwater and 71 freshwater) were retrospectively investigated; all had undergone post-mortem CT and forensic autopsy. Sinus fluid volume and density were calculated using a 3D-DICOM workstation, and differences were evaluated. Diagnostic performance of these indicators for saltwater drowning was evaluated using a cut-off value calculated by receiver operating characteristic (ROC) analysis. The median sinus fluid volume was 5.68 mL in cases of saltwater drowning (range 0.08 to 37.55) and 5.46 mL in cases of freshwater drowning (0.02 to 27.68), and the average densities were 47.28 (14.26 to 75.98) HU and 32.56 (-14.38 to 77.43) HU, respectively. While sinus volume did not differ significantly (p = 0.6000), sinus density was significantly higher in saltwater than freshwater drowning cases (p = 0.0002). ROC analysis for diagnosis of saltwater drowning determined the cut-off value as 37.77 HU, with a sensitivity of 77 %, specificity of 72 %, PPV of 46 % and NPV of 91 %. The average density of sinus fluid in cases of saltwater drowning was significantly higher than in freshwater drowning cases; there was no significant difference in the sinus fluid volume. (orig.)

  19. Puget Sound Recreational Shellfish Harvesting Survey - Model Intended Angler Behavior

    Data.gov (United States)

    National Oceanic and Atmospheric Administration, Department of Commerce — Collect and analyze survey data from recreational saltwater fishermen in Oregon and Washington. Model trip demand using stated frequency / contingent behavior data....

  20. Using state-of-the-art technology to evaluate saltwater intrusion in the Biscayne aquifer of Miami-Dade County, Florida

    Science.gov (United States)

    Prinos, Scott T.

    2014-01-01

    The fresh groundwater supplies of many communities have been adversely affected or limited by saltwater intrusion. An insufficient understanding of the origin of intruded saltwater may lead to inefficient or ineffective water-resource management. A 2008–2012 cooperative U.S. Geological Survey (USGS) and Miami-Dade County study of saltwater intrusion describes state-of-the art technology used to evaluate the origin and distribution of this saltwater.

  1. Angler-caught piscivore diets reflect fish community changes in Lake Huron

    Science.gov (United States)

    Roseman, Edward F.; Schaeffer, Jeff; Bright, Ethan; Fielder, David G.

    2014-01-01

    Examination of angler-caught piscivore stomachs revealed that Lake Trout Salvelinus namaycush, Chinook Salmon Oncorhynchus tshawytscha, and Walleyes Sander vitreus altered theirdiets in response to unprecedented declines in Lake Huron's main-basin prey fish community.Diets varied by predator species, season, and location but were nearly always dominated numerically by some combination of Alewife Alosa pseudoharengus, Rainbow Smelt Osmerus mordax, Emerald Shiner Notropis atherinoides, Round Goby Neogobius melanostomus, or terrestrial insects. Rainbow Trout Oncorhynchus mykiss (steelhead), Coho Salmon Oncorhynchus kisutch, and Atlantic Salmon Salmo salar had varied diets that reflected higher contributions of insects. Compared with an earlier (1983–1986) examination of angler-caught predator fishes from Lake Huron, the contemporary results showed an increase in consumption of nontraditional prey (including conspecifics), use of smaller prey, and an increase in insects in the diet, suggesting that piscivores were faced with chronic prey limitation during this study. The management of all piscivores in Lake Huron will likely require consideration of the pervasive effects of changes in food webs, especially if prey fish remain at low levels.

  2. Modeling Approach for Estimating Co-Produced Water Volumes and Saltwater Disposal Volumes in Oklahoma

    Science.gov (United States)

    Murray, K. E.

    2016-12-01

    Management of produced fluids has become an important issue in Oklahoma because large volumes of saltwater are co-produced with oil and gas, and disposed into saltwater disposal wells at high rates. Petroleum production increased from 2009-2015, especially in central and north-central Oklahoma where the Mississippian and Hunton zones were redeveloped using horizontal wells and dewatering techniques that have led to a disproportional increase in produced water volumes. Improved management of co-produced water, including desalination for beneficial reuse and decreased saltwater disposal volumes, is only possible if spatial and temporal trends can be defined and related to the producing zones. It is challenging to quantify the volumes of co-produced water by region or production zone because co-produced water volumes are generally not reported. Therefore, the goal of this research is to estimate co-produced water volumes for 2008-present with an approach that can be replicated as petroleum production shifts to other regions. Oil and gas production rates from subsurface zones were multiplied by ratios of H2O:oil and H2O:gas for the respective zones. Initial H2O:oil and H2O:gas ratios were adjusted/calibrated, by zone, to maximize correlation of county-scale produced H2O estimates versus saltwater disposal volumes from 2013-2015. These calibrated ratios were then used to compute saltwater disposal volumes from 2008-2012 because of apparent data gaps in reported saltwater disposal volumes during that timeframe. This research can be used to identify regions that have the greatest need for produced water treatment systems. The next step in management of produced fluids is to explore optimal energy-efficient strategies that reduce deleterious effects.

  3. AFSC/REFM: Alaska Saltwater Sport Fishing Charter Business Survey

    Data.gov (United States)

    National Oceanic and Atmospheric Administration, Department of Commerce — The purpose of this project was to collect cost, earning, and employment information from the Alaska saltwater sport fishing charter business sector during the...

  4. Perfluorinated compounds in fish and blood of anglers at Lake Möhne, Sauerland area, Germany.

    Science.gov (United States)

    Hölzer, Jürgen; Göen, Thomas; Just, Paul; Reupert, Rolf; Rauchfuss, Knut; Kraft, Martin; Müller, Johannes; Wilhelm, Michael

    2011-10-01

    Perfluorinated compounds (PFCs) were measured in fish samples and blood plasma of anglers in a cross-sectional study at Lake Möhne, Sauerland area, Germany. Human plasma and drinking water samples were analyzed by solid phase extraction, high-performance liquid chromatography (HPLC), and tandem mass spectrometry (MS/MS). PFCs in fish fillet were measured by ion pair extraction followed by HPLC and MS/MS. PFOS concentrations in 44 fish samples of Lake Möhne ranged between 4.5 and 150 ng/g. The highest median PFOS concentrations have been observed in perches (median: 96 ng/g) and eels (77 ng/g), followed by pikes (37 ng/g), whitefish (34 ng/g), and roaches (6.1 ng/g). In contrast, in a food surveillance program only 11% of fishes at retail sale contained PFOS at detectable concentrations. One hundred five anglers (99 men, 6 women; 14-88 years old; median 50.6 years) participated in the human biomonitoring study. PFOS concentrations in blood plasma ranged from 1.1 to 650 μg/L (PFOA: 2.1-170 μg/L; PFHxS: 0.4-17 μg/L; LOD: 0.1 μg/L). A distinct dose-dependent relationship between fish consumption and internal exposure to PFOS was observed. PFOS concentrations in blood plasma of anglers consuming fish 2-3 times per month were 7 times higher compared to those without any fish consumption from Lake Möhne. The study results strongly suggest that human internal exposure to PFC is distinctly increased by consumption of fish from PFC-contaminated sites.

  5. Climate Change and Saltwater Intrusion along the Eastern ...

    International Development Research Centre (IDRC) Digital Library (Canada)

    The Eastern Mediterranean is highly vulnerable to saltwater intrusion into the freshwater aquifers along its coasts. The degradation of these aquifers would result in serious socioeconomic consequence to people living there. This project will investigate how climate change is affecting the salinity of coastal aquifers at several ...

  6. Saltwater intrusion in the surficial aquifer system of the Big Cypress Basin, southwest Florida, and a proposed plan for improved salinity monitoring

    Science.gov (United States)

    Prinos, Scott T.

    2013-01-01

    The installation of drainage canals, poorly cased wells, and water-supply withdrawals have led to saltwater intrusion in the primary water-use aquifers in southwest Florida. Increasing population and water use have exacerbated this problem. Installation of water-control structures, well-plugging projects, and regulation of water use have slowed saltwater intrusion, but the chloride concentration of samples from some of the monitoring wells in this area indicates that saltwater intrusion continues to occur. In addition, rising sea level could increase the rate and extent of saltwater intrusion. The existing saltwater intrusion monitoring network was examined and found to lack the necessary organization, spatial distribution, and design to properly evaluate saltwater intrusion. The most recent hydrogeologic framework of southwest Florida indicates that some wells may be open to multiple aquifers or have an incorrect aquifer designation. Some of the sampling methods being used could result in poor-quality data. Some older wells are badly corroded, obstructed, or damaged and may not yield useable samples. Saltwater in some of the canals is in close proximity to coastal well fields. In some instances, saltwater occasionally occurs upstream from coastal salinity control structures. These factors lead to an incomplete understanding of the extent and threat of saltwater intrusion in southwest Florida. A proposed plan to improve the saltwater intrusion monitoring network in the South Florida Water Management District’s Big Cypress Basin describes improvements in (1) network management, (2) quality assurance, (3) documentation, (4) training, and (5) data accessibility. The plan describes improvements to hydrostratigraphic and geospatial network coverage that can be accomplished using additional monitoring, surface geophysical surveys, and borehole geophysical logging. Sampling methods and improvements to monitoring well design are described in detail. Geochemical analyses

  7. Smartphones reveal angler behavior: A case study of a popular mobile fishing application in Alberta, Canada

    Science.gov (United States)

    Papenfuss, Jason T.; Phelps, Nicholas; Fulton, David C.; Venturelli, Paul A.

    2015-01-01

    Successfully managing fisheries and controlling the spread of invasive species depends on the ability to describe and predict angler behavior. However, finite resources restrict conventional survey approaches and tend to produce retrospective data that are limited in time or space and rely on intentions or attitudes rather than actual behavior. In this study, we used three years of angler data from a popular mobile fishing application in Alberta, Canada, to determine province-wide, seasonal patterns of (1) lake popularity that were consistent with conventional data and (2) anthropogenic lake connectivity that has not been widely described in North America. Our proof-of-concept analyses showed that mobile apps can be an inexpensive source of high-resolution, real-time data for managing fisheries and invasive species. We also identified key challenges that underscore the need for further research and development in this new frontier that combines big data with increased stakeholder interaction and cooperation.

  8. Wetting and evaporation of salt-water nanodroplets: A molecular dynamics investigation.

    Science.gov (United States)

    Zhang, Jun; Borg, Matthew K; Sefiane, Khellil; Reese, Jason M

    2015-11-01

    We employ molecular dynamics simulations to study the wetting and evaporation of salt-water nanodroplets on platinum surfaces. Our results show that the contact angle of the droplets increases with the salt concentration. To verify this, a second simulation system of a thin salt-water film on a platinum surface is used to calculate the various surface tensions. We find that both the solid-liquid and liquid-vapor surface tensions increase with salt concentration and as a result these cause an increase in the contact angle. However, the evaporation rate of salt-water droplets decreases as the salt concentration increases, due to the hydration of salt ions. When the water molecules have all evaporated from the droplet, two forms of salt crystals are deposited, clump and ringlike, depending on the solid-liquid interaction strength and the evaporation rate. To form salt crystals in a ring, it is crucial that there is a pinned stage in the evaporation process, during which salt ions can move from the center to the rim of the droplets. With a stronger solid-liquid interaction strength, a slower evaporation rate, and a higher salt concentration, a complete salt crystal ring can be deposited on the surface.

  9. Saltwater Intrusion Appraisal of Shallow Aquifer in Burutu Area of ...

    African Journals Online (AJOL)

    ADOWIE PERE

    is not caused by saltwater intrusion rather by iron which cannot be separately distinguished from groundwater by ... The sand and gravels forms the aquifer in the. Formation and are .... K.S; Soulios, G; Pliakas, F; Tsokas, G ( 2016). Seawater ...

  10. The Development of Sustainable Saltwater-Based Food Production Systems: A Review of Established and Novel Concepts

    Directory of Open Access Journals (Sweden)

    Daryl Gunning

    2016-12-01

    Full Text Available The demand for seafood products on the global market is rising, particularly in Asia, as affluence and appreciation of the health benefits of seafood increase. This is coupled with a capture fishery that, at best, is set for stagnation and, at worst, significant collapse. Global aquaculture is the fastest growing sector of the food industry and currently accounts for approximately 45.6% of the world’s fish consumption. However, the rapid development of extensive and semi-extensive systems, particularly intensive marine-fed aquaculture, has resulted in worldwide concern about the potential environmental, economic, and social impacts of such systems. In recent years, there has been a significant amount of research conducted on the development of sustainable saltwater-based food production systems through mechanical (e.g., recirculatory aquaculture (RAS systems methods and ecosystem-based approaches (e.g., integrated multi-trophic aquaculture (IMTA. This review article will examine the potential negative impacts of monocultural saltwater aquaculture operations and review established (RAS and novel (IMTA; constructed wetlands; saltwater aquaponics saltwater-based food production systems and discuss their (potential contribution to the development of sustainable and environmentally-friendly systems.

  11. Geophysical characterization of saltwater intrusion in a coastal aquifer: The case of Martil-Alila plain (North Morocco)

    Science.gov (United States)

    Himi, Mahjoub; Tapias, Josefiina; Benabdelouahab, Sara; Salhi, Adil; Rivero, Luis; Elgettafi, Mohamed; El Mandour, Abdenabi; Stitou, Jamal; Casas, Albert

    2017-02-01

    Several factors can affect the quantity and the quality of groundwater resources, but in coastal aquifers seawater intrusion is often the most significant issue regarding freshwater supply. Further, saltwater intrusion is a worldwide issue because about seventy percent of the world's population lives in coastal regions. Generally, fresh groundwater not affected by saltwater intrusion is characterized by low salinity and therefore low electrical conductivity (EC) values. Consequently, high values of EC in groundwater along the coastline are usually associated to seawater intrusion. This effect is amplified if the coastal aquifer is overexploited with a subsequent gradual displacement of the freshwater-saltwater interface towards the continent. Delineation of marine intrusion in coastal aquifers has traditionally relied upon observation wells and collection of water samples. This approach may miss important hydrologic features related to saltwater intrusion in areas where access is difficult and where wells are widely spaced. Consequently, the scarcity of sampling points and sometimes their total absence makes the number of data available limited and most of the time not representative for mapping the spatial and temporal variability of groundwater salinity. In this study, we use a series of geophysical methods for characterizing the aquifer geometry and the extension of saltwater intrusion in the Martil-Alila coastal region (Morocco) as a complement to geological and hydrogeochemical data. For this reason, we carried out three geophysical surveys: Gravity, Electrical Resistivity and Frequency Domain Electromagnetic. The geometry of the basin has been determined from the interpretation of a detailed gravity survey. Electrical resistivity models derived from vertical electrical soundings allowed to characterize the vertical and the lateral extensions of aquifer formations. Finally, frequency domain electromagnetic methods allowed delineating the extension of the

  12. Application of Time-Domain Electromagnetic Method in Investigating Saltwater Intrusion of Santiago Island (Cape Verde)

    Science.gov (United States)

    Gonçalves, Rui; Farzamian, Mohammad; Monteiro Santos, Fernando A.; Represas, Patrícia; Mota Gomes, A.; Lobo de Pina, A. F.; Almeida, Eugénio P.

    2017-11-01

    Santiago Island, the biggest and most populated island of the Cape Verde Republic, is characterised by limited surface waters and strong dependence on groundwater sources as the primary source of natural water supply for extensive agricultural activity and human use. However, as a consequence of the scarce precipitation and high evaporation as well as the intense overexploitation of the groundwater resources, the freshwater management is also in a delicate balance with saltwater at coastal areas. The time-domain electromagnetic (TDEM) method is used to locate the extent of saltwater intrusion in four important agricultural regions in Santiago Island; São Domingos, Santa Cruz, São Miguel, and Tarrafal. The application of this method in Santiago Island proves it to be a successful tool in imaging the fresh/saltwater interface location. Depths to the saline zones and extensions of saline water are mapped along eight TDEM profiles.

  13. Practices and attitudes of Indian catch-and-release anglers: identifying opportunities for advancing the management of recreational fisheries

    Directory of Open Access Journals (Sweden)

    Nishikant Gupta

    2016-04-01

    Full Text Available Recreational fishing, a popular leisure activity, can potentially support conservation of species and provide socio-economic benefits to local economies.  Nonetheless, there are ecological concerns regarding this pastime, especially in developing economies such as India where little information is available concerning impacts on fish populations.  An online survey targeting recreational anglers practicing catch-and-release (C&R in India (n=200 revealed 25 states/union territories as prime angling locations, with Mahseer (Tor spp. constituting the main target species group (53%.  Angling season (28% and pristine river surroundings (14% were stated as major factors important for angling, while overfishing (31% and the use of illegal fishing techniques were highlighted as chief threats to fish species.  Respondents were in favour of strictly adhering to C&R guidelines (23%, controlling illegal fishing techniques and pollution (18% and spreading awareness and education among local stakeholders (18% to protect fish.  Over 75% of respondents were also willing to contribute both their time and money to conservation initiatives focusing on key sport fish.  With anglers targeting multiple fishing locations throughout India, there is a need for consistent governance structures and policy instruments to support the development of sustainable recreational fisheries while minimising conflict with other stakeholder groups.  The impacts of C&R fisheries interactions on individuals and populations (especially for threatened species need to be studied in the Indian context.  Direct participation by recreational anglers in C&R research could strengthen broader conservation and management initiatives throughout the country by increasing stewardship.  

  14. Stratigraphic controls on saltwater intrusion in the Dominguez Gap area of coastal Los Angeles

    Science.gov (United States)

    Edwards, B.D.; Ehman, K.D.; Ponti, D.J.; Reichard, E.G.; Tinsley, J.C.; Rosenbauer, R.J.; Land, M.

    2009-01-01

    The Los Angeles Basin is a densely populated coastal area that significantly depends on groundwater. A part of this groundwater supply is at risk from saltwater intrusion-the impetus for this study. High-resolution seismic-reflection data collected from the Los Angeles-Long Beach Harbor Complex have been combined with borehole geophysical and descriptive geological data from four nearby ??400-m-deep continuously cored wells and with borehole geophysical data from adjacent water and oil wells to characterize the Pliocene to Holocene stratigraphy of the Dominguez Gap coastal aquifer system. The new data are shown as a north-south, two- dimensional, sequence-stratigraphic model that is compared to existing lithostratigraphic models of the Los Angeles Basin in an attempt to better understand pathways of saltwater intrusion into coastal aquifers. Intrusion of saltwater into the coastal aquifer system generally is attributed to over-pumping that caused the hydraulic gradient to reverse during the mid-1920s. Local water managers have used the existing lithostratigraphic model to site closely spaced injection wells of freshwater (barrier projects) attempting to hydraulically control the saltwater intrusion. Improved understanding of the stratigraphic relationships can guide modifications to barrier design that will allow more efficient operation. Allostratigraphic nomenclature is used to define a new sequence-stratigraphic model for the area because the existing lithostratigraphic correlations that have been used to define aquifer systems are shown not to be time-correlative. The youngest sequence, the Holocene Dominguez sequence, contains the Gaspur aquifer at its base. The Gaspur aquifer is intruded with saltwater and consists of essentially flat-lying gravelly sands deposited by the ancestral Los Angeles River as broad channels that occupied a paleovalley incised into the coastal plain during the last glacio-eustatic highstand. The underlying sequences are deformed into

  15. Evaluation of the effects of sea-level change and coastal canal management on saltwater intrusion in the Biscayne aquifer of south Florida, USA

    Science.gov (United States)

    Hughes, J. D.; Sifuentes, D. F.; White, J.

    2015-12-01

    Sea-level increases are expected to have an effect on the position of the freshwater-saltwater interface in the Biscayne aquifer in south Florida as a result of the low topographic relief of the area and high rates of groundwater withdrawal from the aquifer. To study the effects that future sea-level increases will have on saltwater intrusion in the Biscayne aquifer in Broward County, Florida, a three-dimensional, variable-density, groundwater-flow and transport model was developed. The model was calibrated to observed groundwater heads and chloride concentrations for a 62-year period that includes historic increases in sea level, development of a surface-water management system to control flooding, and increases in groundwater withdrawals as the area transitioned from agricultural to urban land uses. Sensitivity analyses indicate that downward leakage of saltwater from coastal canals and creeks was the primary source of saltwater to the Biscayne aquifer during the last 62-years in areas where the surface-water system is not actively managed and is tidally influenced. In areas removed from the coastal canals and creeks or under active surface-water management, historic groundwater withdrawals were the primary cause of saltwater intrusion into the aquifer. Simulation of future conditions suggests that possible increases in sea level will result in additional saltwater intrusion. Model scenarios suggest that additional saltwater intrusion will be greatest in areas where coastal canals and creeks were historically the primary source of seawater. Future saltwater intrusion in those areas, however, may be reduced by relocation of salinity-control structures.

  16. Theory and application of an approximate model of saltwater upconing in aquifers

    Science.gov (United States)

    McElwee, C.; Kemblowski, M.

    1990-01-01

    Motion and mixing of salt water and fresh water are vitally important for water-resource development throughout the world. An approximate model of saltwater upconing in aquifers is developed, which results in three non-linear coupled equations for the freshwater zone, the saltwater zone, and the transition zone. The description of the transition zone uses the concept of a boundary layer. This model invokes some assumptions to give a reasonably tractable model, considerably better than the sharp interface approximation but considerably simpler than a fully three-dimensional model with variable density. We assume the validity of the Dupuit-Forchheimer approximation of horizontal flow in each layer. Vertical hydrodynamic dispersion into the base of the transition zone is assumed and concentration of the saltwater zone is assumed constant. Solute in the transition zone is assumed to be moved by advection only. Velocity and concentration are allowed to vary vertically in the transition zone by using shape functions. Several numerical techniques can be used to solve the model equations, and simple analytical solutions can be useful in validating the numerical solution procedures. We find that the model equations can be solved with adequate accuracy using the procedures presented. The approximate model is applied to the Smoky Hill River valley in central Kansas. This model can reproduce earlier sharp interface results as well as evaluate the importance of hydrodynamic dispersion for feeding salt water to the river. We use a wide range of dispersivity values and find that unstable upconing always occurs. Therefore, in this case, hydrodynamic dispersion is not the only mechanism feeding salt water to the river. Calculations imply that unstable upconing and hydrodynamic dispersion could be equally important in transporting salt water. For example, if groundwater flux to the Smoky Hill River were only about 40% of its expected value, stable upconing could exist where

  17. Evaluation of the Impact of Groundwater Pumping on Freshwater-Saltwater Interface Fluctuations in a Coastal Aquifer of South Korea

    Science.gov (United States)

    Yoon, H.; Kim, Y.; Lee, S. H.; Ha, K.

    2017-12-01

    It is necessary to monitor the variation of freshwater-saltwater interface for the sustainable use of groundwater resources in coastal areas. In the present study, we developed a device to measure the location of the freshwater-saltwater interface based on the concept of the neutral buoyancy and installed it in a coastal aquifer of the western sea, South Korea. To evaluate the impact of pumping on the groundwater and saltwater-freshwater interface level, we designed nine different pumping scenarios and monitored the groundwater and saltwater-freshwater interface levels of pumping well and two observation wells. The result of monitoring groundwater level shows that the response of observation wells to the pumping is relatively fast and high, however, the response of freshwater-saltwater interface occurred when the pumping rate and duration are over 25m3/day and 48hours, respectively. For the prediction and simulation of the groundwater level fluctuation under groundwater pumping events, we designed a artificial neural network based time series model considering rainfall, tide, and pumping rate as input components. The result of the prediction shows that the correlation coefficient between observed and estimated groundwater levels is as high as 0.7. It is expected that the result of this research can provide useful information for the effective management of groundwater resources in the study area.

  18. Simulation of saltwater movement in the Floridan aquifer system, Hilton Head Island, South Carolina

    Science.gov (United States)

    Bush, Peter W.

    1988-01-01

    Freshwater to supply Hilton Head Island, S.C., is obtained from the upper permeable zone of the Upper Floridan aquifer. Long-term pumping at Savannah, Ga., and the steadily increasing pumping on Hilton Head Island, have lowered Upper Floridan heads near the center of the island from about 10 feet above sea level to about 6 to 7 feet below sea level. The seaward hydraulic gradient that existed before pumping began has been reversed, thus increasing the potential for saltwater intrusion. Simulations of predevelopment, recent, and future ground-water flow in the Floridan aquifer system beneath the north end of Hilton Head Island and Port Royal Sound are presented. A finite-element model for fluid-density-dependent ground-water flow and solute transport was used in cross section. The general configuration of the simulated predevelopment flowfield is typical of a coastal aquifer having a seaward gradient in the freshwater. The freshwater flows toward Port Royal Sound over an intruding wedge of saltwater. The simulated flowfield at the end of 1983 shows that ground water in the Floridan aquifer system beneath most of Hilton Head Island has reversed its predevelopment direction and is moving toward Savannah. The distribution of chloride concentrations, based on simulation at the end of 1983, is about the same as the predevelopment distribution of chloride concentrations obtained from simulation. Results of two 50-year simulations from 1983 to 2034 suggest that there will be no significant threat of saltwater intrusion into the upper permeable zone of the Upper Floridan aquifer if heads on Hilton Head Island remain at current levels for the next 45 to 50 years. However, if head decline continues at the historical rate, any flow that presently occurs from the north end of the island toward Port Royal Sound will cease, allowing lateral intrusion of saltwater to proceed. Even under these conditions, chloride concentrations in the upper permeable zone of the Upper Floridan

  19. Effects of sea-level rise and pumpage elimination on saltwater intrusion in the Hilton Head Island area, South Carolina, 2004-2104

    Science.gov (United States)

    Payne, Dorothy F.

    2010-01-01

    Saltwater intrusion of the Upper Floridan aquifer has been observed in the Hilton Head area, South Carolina since the late 1970s and currently affects freshwater supply. Rising sea level in the Hilton Head Island area may contribute to the occurrence of and affect the rate of saltwater intrusion into the Upper Floridan aquifer by increasing the hydraulic gradient and by inundating an increasing area with saltwater, which may then migrate downward into geologic units that presently contain freshwater. Rising sea level may offset any beneficial results from reductions in groundwater pumpage, and thus needs to be considered in groundwater-management decisions. A variable-density groundwater flow and transport model was modified from a previously existing model to simulate the effects of sea-level rise in the Hilton Head Island area. Specifically, the model was used to (1) simulate trends of saltwater intrusion from predevelopment to the present day (1885-2004) and evaluate the conceptual model, (2) project these trends from the present day into the future based on different potential rates of sea-level change, and (3) evaluate the relative influences of pumpage and sea-level rise on saltwater intrusion. Four scenarios were simulated for 2004-2104: (1) continuation of the estimated sea-level rise rate over the last century, (2) a doubling of the sea-level rise, (3) a cessation of sea-level rise, and (4) continuation of the rate over the last century coupled with an elimination of all pumpage. Results show that, if present-day (year 2004) pumping conditions are maintained, the extent of saltwater in the Upper Floridan aquifer will increase, whether or not sea level continues to rise. Furthermore, if all pumpage is eliminated and sea level continues to rise, the simulated saltwater extent in the Upper Floridan aquifer is reduced. These results indicate that pumpage is a strong driving force for simulated saltwater intrusion, more so than sea-level rise at current rates

  20. Map of the approximate inland extent of saltwater at the base of the Biscayne aquifer in the Model Land Area of Miami-Dade County, Florida, 2016

    Science.gov (United States)

    Prinos, Scott T.

    2017-07-11

    The inland extent of saltwater at the base of the Biscayne aquifer in the Model Land Area of Miami-Dade County, Florida, was mapped in 2011. Since that time, the saltwater interface has continued to move inland. The interface is near several active well fields; therefore, an updated approximation of the inland extent of saltwater and an improved understanding of the rate of movement of the saltwater interface are necessary. A geographic information system was used to create a map using the data collected by the organizations that monitor water salinity in this area. An average rate of saltwater interface movement of 140 meters per year was estimated by dividing the distance between two monitoring wells (TPGW-7L and Sec34-MW-02-FS) by the travel time. The travel time was determined by estimating the dates of arrival of the saltwater interface at the wells and computing the difference. This estimate assumes that the interface is traveling east to west between the two monitoring wells. Although monitoring is spatially limited in this area and some of the wells are not ideally designed for salinity monitoring, the monitoring network in this area is improving in spatial distribution and most of the new wells are well designed for salinity monitoring. The approximation of the inland extent of the saltwater interface and the estimated rate of movement of the interface are dependent on existing data. Improved estimates could be obtained by installing uniformly designed monitoring wells in systematic transects extending landward of the advancing saltwater interface.

  1. Impact of the bottom drag coefficient on saltwater intrusion in the extremely shallow estuary

    Science.gov (United States)

    Lyu, Hanghang; Zhu, Jianrong

    2018-02-01

    The interactions between the extremely shallow, funnel-shaped topography and dynamic processes in the North Branch (NB) of the Changjiang Estuary produce a particular type of saltwater intrusion, saltwater spillover (SSO), from the NB into the South Branch (SB). This dominant type of saltwater intrusion threatens the winter water supplies of reservoirs located in the estuary. Simulated SSO was weaker than actual SSO in previous studies, and this problem has not been solved until now. The improved ECOM-si model with the advection scheme HSIMT-TVD was applied in this study. Logarithmic and Chézy-Manning formulas of the bottom drag coefficient (BDC) were established in the model to investigate the associated effect on saltwater intrusion in the NB. Modeled data and data collected at eight measurement stations located in the NB from February 19 to March 1, 2017, were compared, and three skill assessment indicators, the correlation coefficient (CC), root-mean-square error (RMSE), and skill score (SS), of water velocity and salinity were used to quantitatively validate the model. The results indicated that the water velocities modeled using the Chézy-Manning formula of BDC were slightly more accurate than those based on the logarithmic BDC formula, but the salinities produced by the latter formula were more accurate than those of the former. The results showed that the BDC increases when water depth decreases during ebb tide, and the results based on the Chézy-Manning formula were smaller than those based on the logarithmic formula. Additionally, the landward net water flux in the upper reaches of the NB during spring tide increases based on the Chézy-Manning formula, and saltwater intrusion in the NB was enhanced, especially in the upper reaches of the NB. At a transect in the upper reaches of the NB, the net transect water flux (NTWF) is upstream in spring tide and downstream in neap tide, and the values produced by the Chézy-Manning formula are much larger than

  2. Mapping saltwater intrusion in the Biscayne Aquifer, Miami-Dade County, Florida using transient electromagnetic sounding

    Science.gov (United States)

    Fitterman, David V.

    2014-01-01

    Saltwater intrusion in southern Florida poses a potential threat to the public drinking-water supply that is typically monitored using water samples and electromagnetic induction logs collected from a network of wells. Transient electromagnetic (TEM) soundings are a complementary addition to the monitoring program because of their ease of use, low cost, and ability to fill in data gaps between wells. TEM soundings have been used to map saltwater intrusion in the Biscayne aquifer over a large part of south Florida including eastern Miami-Dade County and the Everglades. These two areas are very different with one being urban and the other undeveloped. Each poses different conditions that affect data collection and data quality. In the developed areas, finding sites large enough to make soundings is difficult. The presence of underground pipes further restricts useable locations. Electromagnetic noise, which reduces data quality, is also an issue. In the Everglades, access to field sites is difficult and working in water-covered terrain is challenging. Nonetheless, TEM soundings are an effective tool for mapping saltwater intrusion. Direct estimates of water quality can be obtained from the inverted TEM data using a formation factor determined for the Biscayne aquifer. This formation factor is remarkably constant over Miami-Dade County owing to the uniformity of the aquifer and the absence of clay. Thirty-six TEM soundings were collected in the Model Land area of southeast Miami-Dade County to aid in calibration of a helicopter electromagnetic (HEM) survey. The soundings and HEM survey revealed an area of saltwater intrusion aligned with canals and drainage ditches along U.S. Highway 1 and the Card Sound Road. These canals and ditches likely reduced freshwater levels through unregulated drainage and provided pathways for seawater to flow at least 12.4 km inland.

  3. Halotolerant ability and α-amylase activity of some saltwater fungal isolates

    NARCIS (Netherlands)

    Niknejad, F.; Moshfegh, M.; Najafzadeh, M.J.; Houbraken, J.; Rezaei, S.; Zarrini, G.; Faramarzi, M.A.; Nafissi-Varcheh, N.

    2013-01-01

    Four halotolerant fungal isolates originating from the saltwater Lake Urmia in Iran were selected during a screening program for salt resistance and α-amylase activity. The isolates were identified based on sequencing the ITS region and a part of the β-tubulin gene, as Penicillium chrysogenum

  4. Electrolytes imbalance in saltwater near-drowning victims in the Gulf of Thailand.

    Science.gov (United States)

    Yongsiri, Somchai; Dinchuthai, Pakapan; Thammakumpee, Jiranuch; Prongnamchai, Suriya; Chueansuwan, Rachaneeporn; Tangjaturonrasme, Siriporn; Chaivanit, Pechngam

    2013-10-01

    Near-drowning victims in saltwater are expected to have multiple electrolytes imbalance that affected treatment outcome. There are limited data about these parameters in Thailand to guide the treatment plan. To study the characteristic of electrolytes imbalance in saltwater near-drowning victims in the Gulf of Thailand. Retrospective analytic study of 39 medical records of near-drowning patients admitted to Burapha University Hospital between 2000 and 2010. Characteristics of the patients and serum electrolytes were analyzed by SPSS version 19 for windows. The study included 23 male, 16 female patients. Average age was 14.46 +/- 11.15 years and 19/39 (48.72%) patients were aged 10 or less. The following electrolytes imbalance were identified, hypokalemia 8/39 (20.51%), hypernatremia 12/39 (30.77%), hyperchloremia 15/39 (38.46%), high anion gap 23/39 (58.97%), and hypobicarbonatemia 28/39 (71.79%). Seven out of eight patients in the hypokalemia group were in the high anion gap group. Mean SpO2 in the patients who had high anion gap was significantly lower than those who had normal anion gap (87.06 +/- 17.68% vs. 95.8 +/- 5.94% p = 0.031) without difference in systolic blood pressure (112.59 +/- 14.63 vs. 105.67 +/- 13.98 p = 0.159). Those who were hypotensive significantly had lower bicarbonate (17.00 +/- 3.51 vs. 20.59 +/- 3.81 p = 0.038) and higher anion gap (19.29 +/- 1.799 vs. 16.25 +/- 6.25 p = 0.025) than normotensive patients. Hypobicarbonatemia, high anion gap, hypernatremia, and hypokalemia were common in saltwater near-drowning patients in the Gulf of Thailand. The cause of high anion gap was probably due to hypoxia and hypotension.

  5. Perfluoroalkyl substances in older male anglers in Wisconsin.

    Science.gov (United States)

    Christensen, Krista Y; Raymond, Michelle; Thompson, Brooke A; Anderson, Henry A

    2016-05-01

    Perfluoroalkyl substances (PFAS) are an emerging class of contaminants. Certain PFAS are regulated or voluntarily limited due to concern about environmental persistence and adverse health effects, including thyroid disease and to dyslipidemia. The major source of PFAS exposure in the general population is seafood. In this analysis we examine PFAS levels and their determinants, as well as associations between PFAS levels and self-reported health outcomes, in a group of older male anglers in Wisconsin with high fish consumption. A biomonitoring study of male anglers aged 50 and older living in Wisconsin collected detailed information on fish consumption, demographics and self-reported health outcomes, along with hair and blood samples for biomarker analysis. Sixteen different PFAS were extracted from serum samples. Regression models were used to identify factors (demographic characteristics and fish consumption habits) associated with PFAS biomarker levels in blood, as well as associations between PFAS and self-reported health outcomes, adjusting for potential confounders. Seven PFAS were detected in at least 30% of participants and were used in subsequent analyses (PFDA, PFHpS, PFHxS, PFNA, PFOA, PFOS, PFuDA). The PFAS with the highest levels were PFOS, followed by PFOA, PFHxS and PFNA (medians of 19.0, 2.5, 1.8 and 1.4ng/mL). In general, increasing age was associated with higher PFAS levels, while increasing BMI were associated with lower PFAS levels. Greater alcohol consumption was associated with higher levels of PFHpS, PFHxS and PFOA. Associations with smoking and employment did not show a consistent pattern. Associations between fish consumption and PFAS were generally weak, with the exception of notably higher PFDA and PFHpS with both other locally-caught fish, and restaurant-purchased fish. Regarding associations with health outcomes, PFuDA, PFNA and PFDA were all associated with increased risk of pre-diabetes and/or diabetes. PFHpS was associated with a

  6. An alternating voltage battery with two salt-water oscillators

    Science.gov (United States)

    Cervellati, Rinaldo; Soldà, Roberto

    2001-05-01

    We built a simple alternating voltage battery that periodically reverses value and sign of its electromotive force (emf). This battery consists of two coupled concentration salt-water oscillators that are phase shifted by initially extracting some drops of salt solution from one of the two oscillators. Although the actual frequency (period: ˜30 s) and emf (˜±55 mV) is low, our battery is suitable to demonstrate a practical application of oscillating systems in the physical, chemical, or biological laboratory for undergraduates. Interpretation of the phenomenon is given.

  7. Seasonal migration of the starry smooth-hound shark Mustelus asterias as revealed from tag-recapture data of an angler-led tagging programme

    NARCIS (Netherlands)

    Breve, N.W.P.; Winter, Hendrik V.; Overzee, van H.M.J.; Farrell, E.D.; Walker, P.

    2016-01-01

    The primary aim of this long-term angler-led tagging programme was to gain information about seasonal changes in distribution of the starry smooth-hound shark Mustelus asterias, along theDutch coast for management and conservation purposes. Between 2011 and 2014, M. asterias comprised 92·6% (n=2418)

  8. Development and evaluation of a regression-based model to predict cesium-137 concentration ratios for saltwater fish

    International Nuclear Information System (INIS)

    Pinder, John E.; Rowan, David J.; Smith, Jim T.

    2016-01-01

    Data from published studies and World Wide Web sources were combined to develop a regression model to predict "1"3"7Cs concentration ratios for saltwater fish. Predictions were developed from 1) numeric trophic levels computed primarily from random resampling of known food items and 2) K concentrations in the saltwater for 65 samplings from 41 different species from both the Atlantic and Pacific Oceans. A number of different models were initially developed and evaluated for accuracy which was assessed as the ratios of independently measured concentration ratios to those predicted by the model. In contrast to freshwater systems, were K concentrations are highly variable and are an important factor in affecting fish concentration ratios, the less variable K concentrations in saltwater were relatively unimportant in affecting concentration ratios. As a result, the simplest model, which used only trophic level as a predictor, had comparable accuracies to more complex models that also included K concentrations. A test of model accuracy involving comparisons of 56 published concentration ratios from 51 species of marine fish to those predicted by the model indicated that 52 of the predicted concentration ratios were within a factor of 2 of the observed concentration ratios. - Highlights: • We developed a model to predict concentration ratios (C_r) for saltwater fish. • The model requires only a single input variable to predict C_r. • That variable is a mean numeric trophic level available at (fishbase.org). • The K concentrations in seawater were not an important predictor variable. • The median-to observed ratio for 56 independently measured C_r was 0.83.

  9. Cathode Composition in a Saltwater Metal-Air Battery

    Directory of Open Access Journals (Sweden)

    William Shen

    2017-01-01

    Full Text Available Metal-air batteries consist of a solid metal anode and an oxygen cathode of ambient air, typically separated by an aqueous electrolyte. Here, simple saltwater-based models of aluminum-air and zinc-air cells are used to determine the differences between theoretical cell electric potentials and experimental electric potentials. A substantial difference is observed. It is also found that the metal cathode material is crucial to cell electric potential, despite the cathode not participating in the net reaction. Finally, the material composition of the cathode appears to have a more significant impact on cell potential than the submerged surface area of the cathode.

  10. Voluntary angler logbooks reveal long-term changes in a lentic pike, Esox lucius, population

    DEFF Research Database (Denmark)

    Jansen, Teunis; Arlinghaus, R.; Als, Thomas Damm

    2013-01-01

    Sixty-two years of voluntarily collected angling logbook data from a large natural Danish lake were used to 2 study variation in pike, Esox lucius L., CPUE (expressed as no. of captured per boat trip) as an index of stock size. Pike CPUE was positively related to pike release rate by anglers...... and negatively affected by certain commercial shers. The stocking of young-of-the-year pike and a shery-dependent index of perch, Perca uviatilis L., abundance (which may be pike prey or predator depending on size) did not correlate with pike CPUE. Analyses of the size distribution of pike, based on sizes...

  11. eRegistries: Electronic registries for maternal and child health.

    Science.gov (United States)

    Frøen, J Frederik; Myhre, Sonja L; Frost, Michael J; Chou, Doris; Mehl, Garrett; Say, Lale; Cheng, Socheat; Fjeldheim, Ingvild; Friberg, Ingrid K; French, Steve; Jani, Jagrati V; Kaye, Jane; Lewis, John; Lunde, Ane; Mørkrid, Kjersti; Nankabirwa, Victoria; Nyanchoka, Linda; Stone, Hollie; Venkateswaran, Mahima; Wojcieszek, Aleena M; Temmerman, Marleen; Flenady, Vicki J

    2016-01-19

    The Global Roadmap for Health Measurement and Accountability sees integrated systems for health information as key to obtaining seamless, sustainable, and secure information exchanges at all levels of health systems. The Global Strategy for Women's, Children's and Adolescent's Health aims to achieve a continuum of quality of care with effective coverage of interventions. The WHO and World Bank recommend that countries focus on intervention coverage to monitor programs and progress for universal health coverage. Electronic health registries - eRegistries - represent integrated systems that secure a triple return on investments: First, effective single data collection for health workers to seamlessly follow individuals along the continuum of care and across disconnected cadres of care providers. Second, real-time public health surveillance and monitoring of intervention coverage, and third, feedback of information to individuals, care providers and the public for transparent accountability. This series on eRegistries presents frameworks and tools to facilitate the development and secure operation of eRegistries for maternal and child health. In this first paper of the eRegistries Series we have used WHO frameworks and taxonomy to map how eRegistries can support commonly used electronic and mobile applications to alleviate health systems constraints in maternal and child health. A web-based survey of public health officials in 64 low- and middle-income countries, and a systematic search of literature from 2005-2015, aimed to assess country capacities by the current status, quality and use of data in reproductive health registries. eRegistries can offer support for the 12 most commonly used electronic and mobile applications for health. Countries are implementing health registries in various forms, the majority in transition from paper-based data collection to electronic systems, but very few have eRegistries that can act as an integrating backbone for health

  12. The relationships between anglers' risk perception, sensation-seeking, and fishing site choice along the northeast and Yilan Coast Scenic Area, Taiwan

    Science.gov (United States)

    Cheng-Ping Wang

    2009-01-01

    The northeastern coast is one of the best fishing areas in Taiwan, but the terrain, weather, and tides can create a dangerous and even deadly environment. This study examines the relationships between anglers' risk perceptions, sensation seeking, and fishing site choices. Results from a survey conducted at Long-Don in 2005 were analyzed for four dimensions of...

  13. Coastal ground water at risk - Saltwater contamination at Brunswick, Georgia and Hilton Head Island, South Carolina

    Science.gov (United States)

    Krause, Richard E.; Clarke, John S.

    2001-01-01

    IntroductionSaltwater contamination is restricting the development of ground-water supply in coastal Georgia and adjacent parts of South Carolina and Florida. The principal source of water in the coastal area is the Upper Floridan aquifer—an extremely permeable and high-yielding aquifer—which was first developed in the late 1800s. Pumping from the aquifer has resulted in substantial ground-water-level decline and subsequent saltwater intrusion of the aquifer from underlying strata containing highly saline water at Brunswick, Georgia, and with encroachment of sea-water into the aquifer at the northern end of Hilton Head Island, South Carolina. The saltwater contamination at these locations has constrained further development of the Upper Floridan aquifer in the coastal area and has created competing demands for the limited supply of freshwater. The Georgia Department of Natural Resources, Georgia Environmental Protection Division (GaEPD) has restricted permitted withdrawal of water from the Upper Floridan aquifer in parts of the coastal area (including the Savannah and Brunswick areas) to 1997 rates, and also has restricted additional permitted pumpage in all 24 coastal area counties to 36 million gallons per day above 1997 rates. These actions have prompted interest in alternative management of the aquifer and in the development of supplemental sources of water supply including those from the shallower surficial and upper and lower Brunswick aquifers and from the deeper Lower Floridan aquifer.

  14. EMI Registry Design

    CERN Document Server

    Memon, S

    2011-01-01

    Grid services are the fundamental building blocks of today's Distributed Computing Infrastructures (DCI). The discovery of services in the DCI is a primary function that is a precursor to other tasks such as workload and data management. In this context, a service registry can be used to fulfil such a requirement. Existing service registries, such as the ARC Information Index or UNICORE Registry, are examples that have proven themselves in production environments. Such implementations provide a centralized service registry, however, todays DCIs, such as EGI, are based on a federation model. It is therefore necessary for the service registry to mirror such a model in order for it to seamlessly fit into the operational and management requirements - a DCI built using federated approach. This document presents an architecture for a federated service registry and a prototype based on this architecture, the EMI Registry. Special attention is given to how the federated service registry is robust to environment failu...

  15. Notes on saltwater intrusion and trace element distribution in Metro Manila groundwaters

    International Nuclear Information System (INIS)

    Santos, G. Jr.; Ramos, A.F.; Fernandez, L.G.; Almoneda, R.V.; Garcia, T.Y.; Cruz, C.C.; Petrache, C.A.; Andal, T.T.; Alcantara, E.

    1989-01-01

    Preliminary analyses of waters for uranium and other trace elements from deepwells operated by the Metropolitan Waterworks and Sewerage System (MWSS) in Metro Manila were performed. Uranium, which ranged from 0.2 ppb to 6 ppb, was correlated with saltwater intrusion. Values >=0.8 ppb for uranium were considered indicative of saline water intrusion in the aquifers. Saline water intrusions in Malabon, Navotas, Paranaque, Las Pinas, Bacoor, Imus, Kawit, Pasig, Antipolo, San Mateo, Taguig, Cainta, Taytay, Alabang and Muntinlupa were noted. Most of these areas were also identified by MWSS as being affected by saltwater intrusion. Tritium values ranged from 0 (below detection limits) to 44 tritium units. Except for one well in Muntinlupa, all the values obtained were below the lower limit of detection of 30.83 T.U. Mercury contents in six well locations had values above the maximum limit set by the National Standards for Drinking Water. Four wells exceeded the permissible level for manganese while two wells had iron concentrations greater than the National Standards. Other trace element concentrations such as Cr, Pb, Zn, Co and Ni either did not exceed their permissible levels or were not included in the National Standards. (Auth.). 6 refs.; 1 tab.; 3 figs

  16. Windows registry forensics advanced digital forensic analysis of the Windows registry

    CERN Document Server

    Carvey, Harlan

    2011-01-01

    Harlan Carvey brings readers an advanced book on Windows Registry - the most difficult part of Windows to analyze in forensics! Windows Registry Forensics provides the background of the Registry to help develop an understanding of the binary structure of Registry hive files. Approaches to live response and analysis are included, and tools and techniques for postmortem analysis are discussed at length. Tools and techniques will be presented that take the analyst beyond the current use of viewers and into real analysis of data contained in the Registry. This book also has a DVD containing tools, instructions and videos.

  17. Second generation registry framework.

    Science.gov (United States)

    Bellgard, Matthew I; Render, Lee; Radochonski, Maciej; Hunter, Adam

    2014-01-01

    Information management systems are essential to capture data be it for public health and human disease, sustainable agriculture, or plant and animal biosecurity. In public health, the term patient registry is often used to describe information management systems that are used to record and track phenotypic data of patients. Appropriate design, implementation and deployment of patient registries enables rapid decision making and ongoing data mining ultimately leading to improved patient outcomes. A major bottleneck encountered is the static nature of these registries. That is, software developers are required to work with stakeholders to determine requirements, design the system, implement the required data fields and functionality for each patient registry. Additionally, software developer time is required for ongoing maintenance and customisation. It is desirable to deploy a sophisticated registry framework that can allow scientists and registry curators possessing standard computing skills to dynamically construct a complete patient registry from scratch and customise it for their specific needs with little or no need to engage a software developer at any stage. This paper introduces our second generation open source registry framework which builds on our previous rare disease registry framework (RDRF). This second generation RDRF is a new approach as it empowers registry administrators to construct one or more patient registries without software developer effort. New data elements for a diverse range of phenotypic and genotypic measurements can be defined at any time. Defined data elements can then be utilised in any of the created registries. Fine grained, multi-level user and workgroup access can be applied to each data element to ensure appropriate access and data privacy. We introduce the concept of derived data elements to assist the data element standards communities on how they might be best categorised. We introduce the second generation RDRF that

  18. Saltwater Upconing and Decay Beneath a Well Pumping Above an Interface Zone

    Energy Technology Data Exchange (ETDEWEB)

    Zhou, Quanlin; Bear, Jacob; Bensabat, Jacob

    2004-04-20

    Saltwater, or brine, underlies fresh water in many aquifers, with a transition zone separating them. Pumping fresh water by wells located above the transition zone produces upconing of the latter, eventually salinizing the pumped water, forcing shut-off. The salinity of the pumped water depends on the pumping rate, on the location of the well's screen, on the fresh water flow regime, and on the difference in density between fresh and salt water, expressed as a dimensionless factor called density difference factor (DDF). Following the well's shut-off, the upconed saltwater mound undergoes decay, tending to return to the pre-pumping regime. In this paper, the upconing-decay processes in an axially symmetrical system are investigated to discover how they are affected by the DDF and by the dispersivities. The code FEAS-Brine, developed for the simulation of coupled density-dependent flow and salt transport, is used. In this code, the flow equation is solved by the Galer:wqkin finite element method (FEM), while the advective-dispersive salt transport equation is solved in the Eulerian-Lagrangian framework. This code does not suffer from the instability constraint on the Peclet number in the vicinity of the pumping well, where advection dominates the salt transport. Simulation results show that upconing is very sensitive to the DDF, which, in our work, is in the range from 0 (for ideal tracer) to 0.2 (for brine). It is shown that for the DDF of 0.025 (for seawater), local upconing occurs only for low iso-salinity surfaces, while those of high salt concentration, practically, do not shift toward the pumping well. For an ideal tracer, all iso-salinity surfaces rise toward the pumping well. For brine, however, only iso-salinity surfaces of very low salinity upcone towards the pumping well. The decay process is lengthy; it takes a long time for the upconed saltwater to migrate back to the original horizontal transition zone prior to pumping. However, the wider

  19. Monitoring and Assessment of Saltwater Intrusion using Geographic Information Systems (GIS), Remote Sensing and Geophysical measurements of Guimaras Island, Philippines

    Science.gov (United States)

    Hernandez, B. C. B.

    2015-12-01

    Degrading groundwater quality due to saltwater intrusion is one of the key challenges affecting many island aquifers. These islands hold limited capacity for groundwater storage and highly dependent on recharge due to precipitation. But its ease of use, natural storage and accessibility make it more vulnerable to exploitation and more susceptible to encroachment from its surrounding oceanic waters. Estimating the extent of saltwater intrusion and the state of groundwater resources are important in predicting and managing water supply options for the community. In Guimaras island, central Philippines, increasing settlements, agriculture and tourism are causing stresses on its groundwater resource. Indications of saltwater intrusion have already been found at various coastal areas in the island. A Geographic Information Systems (GIS)-based approach using the GALDIT index was carried out. This includes six parameters assessing the seawater intrusion vulnerability of each hydrogeologic setting: Groundwater occurrence, Aquifer hydraulic conductivity, Groundwater Level above sea, Distance to shore, Impact of existing intrusion and Thickness of Aquifer. To further determine the extent of intrusion, Landsat images of various thematic layers were stacked and processed for unsupervised classification and electrical resistivity tomography using a 28-electrode system with array lengths of 150 and 300 meters was conducted. The GIS index showed where the vulnerable areas are located, while the geophysical measurements and images revealed extent of seawater encroachment along the monitoring wells. These results are further confirmed by the measurements collected from the monitoring wells. This study presents baseline information on the state of groundwater resources and increase understanding of saltwater intrusion dynamics in island ecosystems by providing a guideline for better water resource management in the Philippines.

  20. Linked Registries: Connecting Rare Diseases Patient Registries through a Semantic Web Layer.

    Science.gov (United States)

    Sernadela, Pedro; González-Castro, Lorena; Carta, Claudio; van der Horst, Eelke; Lopes, Pedro; Kaliyaperumal, Rajaram; Thompson, Mark; Thompson, Rachel; Queralt-Rosinach, Núria; Lopez, Estrella; Wood, Libby; Robertson, Agata; Lamanna, Claudia; Gilling, Mette; Orth, Michael; Merino-Martinez, Roxana; Posada, Manuel; Taruscio, Domenica; Lochmüller, Hanns; Robinson, Peter; Roos, Marco; Oliveira, José Luís

    2017-01-01

    Patient registries are an essential tool to increase current knowledge regarding rare diseases. Understanding these data is a vital step to improve patient treatments and to create the most adequate tools for personalized medicine. However, the growing number of disease-specific patient registries brings also new technical challenges. Usually, these systems are developed as closed data silos, with independent formats and models, lacking comprehensive mechanisms to enable data sharing. To tackle these challenges, we developed a Semantic Web based solution that allows connecting distributed and heterogeneous registries, enabling the federation of knowledge between multiple independent environments. This semantic layer creates a holistic view over a set of anonymised registries, supporting semantic data representation, integrated access, and querying. The implemented system gave us the opportunity to answer challenging questions across disperse rare disease patient registries. The interconnection between those registries using Semantic Web technologies benefits our final solution in a way that we can query single or multiple instances according to our needs. The outcome is a unique semantic layer, connecting miscellaneous registries and delivering a lightweight holistic perspective over the wealth of knowledge stemming from linked rare disease patient registries.

  1. A conceptual framework and monitoring strategy for movement of saltwater in the coastal plain aquifer system of Virginia

    Science.gov (United States)

    Mcfarland, E. Randolph

    2015-09-04

    A conceptual framework synthesizes previous studies to provide an understanding of conditions, processes, and relations of saltwater to groundwater withdrawal in the Virginia Coastal Plain aquifer system. A strategy for monitoring saltwater movement is based on spatial relations between the saltwater-transition zone and 612 groundwater-production wells that were regulated during 2013 by the Virginia Department of Environmental Quality. The vertical position and lateral distance and direction of the bottom of each production well’s screened interval was calculated relative to previously published groundwater chloride iso-concentration surfaces. Spatial analysis identified 81 production wells completed in the Yorktown-Eastover and Potomac aquifers that are positioned in closest proximity to the 250-milligrams-per-liter chloride surface, and from which chloride concentrations are most likely to increase above the U.S. Environmental Protection Agency’s 250-milligrams-per-liter secondary maximum-contaminant level. Observation wells are specified to distinguish vertical upconing from lateral intrusion among individual production wells. To monitor upconing, an observation well is to be collocated with each production well and completed at about the altitude of the 250-milligrams-per-liter chloride iso-concentration surface. To monitor lateral intrusion, a potential location of an observation well is projected from the bottom of each production well’s screened interval, in the lateral direction to the underlying chloride surface to a distance of 1 mile.

  2. 78 FR 24069 - Safety Zone; 12th Annual Saltwater Classic; Port Canaveral Harbor; Port Canaveral, FL

    Science.gov (United States)

    2013-04-24

    ... under Executive Order 13045, Protection of Children from Environmental Health Risks and Safety Risks. This rule is not an economically significant rule and does not create an environmental risk to health...-AA00 Safety Zone; 12th Annual Saltwater Classic; Port Canaveral Harbor; Port Canaveral, FL AGENCY...

  3. Deep saltwater in Chalk of North-West Europe: origin, interface characteristics and development over geological time

    DEFF Research Database (Denmark)

    Bonnesen, Ellen Prip; Larsen, F.; Sonnenborg, T.O.

    2009-01-01

    High-concentration saltwaters occur in many places in the regional Chalk aquifers of North-West Europe; to investigate deep occurrences, profiles of interstitial porewater chemistry have been studied from three 250-450m deep cores drilled in the eastern parts of Zealand, Denmark. At the studied...

  4. Clinical Case Registries (CCR)

    Data.gov (United States)

    Department of Veterans Affairs — The Clinical Case Registries (CCR) replaced the former Immunology Case Registry and the Hepatitis C Case Registry with local and national databases. The CCR:HIV and...

  5. Human-crocodile conflict and conservation implications of Saltwater Crocodiles Crocodylus porosus (Reptilia: Crocodylia: Crocodylidae in Sri Lanka

    Directory of Open Access Journals (Sweden)

    A.A. Thasun Amarasinghe

    2015-04-01

    Full Text Available Human-wildlife conflict occurs when human requirements encroach on those of wildlife populations, with potential costs to both humans and wild animals.  As top predators in most inland waters, crocodilians are involved in human-wildlife conflicts in many countries.  Here we present findings of a 5-year survey on human-crocodile conflict on the island of Sri Lanka and relate the results to improving management practices. We aimed to quantify and understand the causes of human-crocodile conflict in Sri Lanka, and propose solutions to mitigate it.  Visual encounter surveys were carried out to estimate the population size of Saltwater Crocodiles. We recorded 778 sightings of Saltwater Crocodiles at 262 of 400 locations surveyed, and estimate the total population to comprise more than 2000 non-hatchlings and to have increased at an average rate of 5% p.a. since 1978. We propose four crocodile vigilance zones within the wet zone and one crocodile vigilance zone within the dry zone of the country. Specific threats to Saltwater Crocodiles identified in crocodile vigilance zones were: habitat destruction and loss; illegal killing and harvesting (17 killings out of fear, ~200 incidents of killing for meat and skins, ~800 eggs annually for consumption; unplanned translocations; and, interaction with urbanization (10 incidents of crocodiles being run over by trains/vehicles and electrocution. Additionally, 33 cases of crocodile attacks on humans were recorded [8 fatal, 25 non-fatal (minor to grievous injuries] and more than 50 incidents of attacks on farm and pet animals. 

  6. Analysis of potential saltwater intrusion at NEP I and II power station

    Energy Technology Data Exchange (ETDEWEB)

    Lee, D.W.

    1980-06-01

    The potential of adverse environmental impacts to groundwater availability and groundwater quality from construction dewatering of the coastal aquifer at a proposed New England Power site was examined with an analytical model. The drawdown zone and the extent of saltwater intrusion were predicted with and without the use of a slurry-wall barrier. The use of a slurry wall to mitigate any adverse impacts is feasible but the limited understanding of the coastal aquifer demands that monitoring requirements be included in the construction plan.

  7. Analysis of potential saltwater intrusion at NEP I and II power station

    International Nuclear Information System (INIS)

    Lee, D.W.

    1980-06-01

    The potential of adverse environmental impacts to groundwater availability and groundwater quality from construction dewatering of the coastal aquifer at a proposed New England Power site was examined with an analytical model. The drawdown zone and the extent of saltwater intrusion were predicted with and without the use of a slurry-wall barrier. The use of a slurry wall to mitigate any adverse impacts is feasible but the limited understanding of the coastal aquifer demands that monitoring requirements be included in the construction plan

  8. The Western Denmark Heart Registry

    DEFF Research Database (Denmark)

    Schmidt, Morten; Maeng, Michael; Madsen, Morten

    2018-01-01

    The WDHR (Western Denmark Heart Registry) is a seminational, multicenter-based registry with longitudinal registration of detailed patient and procedure data since 1999. The registry includes as of January 1, 2017 approximately 240,000 coronary angiographies, 90,000 percutaneous coronary interven......The WDHR (Western Denmark Heart Registry) is a seminational, multicenter-based registry with longitudinal registration of detailed patient and procedure data since 1999. The registry includes as of January 1, 2017 approximately 240,000 coronary angiographies, 90,000 percutaneous coronary...

  9. Workload and time management in central cancer registries: baseline data and implication for registry staffing.

    Science.gov (United States)

    Chapman, Susan A; Mulvihill, Linda; Herrera, Carolina

    2012-01-01

    The Workload and Time Management Survey of Central Cancer Registries was conducted in 2011 to assess the amount of time spent on work activities usually performed by cancer registrars. A survey including 39 multi-item questions,together with a work activities data collection log, was sent by email to the central cancer registry (CCR) manager in each of the 50 states and the District of Columbia. Twenty-four central cancer registries (47%) responded to the survey.Results indicate that registries faced reductions in budgeted staffing from 2008-2009. The number of source records and total cases were important indicators of workload. Four core activities, including abstracting at the registry, visual editing,case consolidation, and resolving edit reports, accounted for about half of registry workload. We estimate an average of 12.4 full-time equivalents (FTEs) are required to perform all cancer registration activities tracked by the survey; however,estimates vary widely by registry size. These findings may be useful for registries as a benchmark for their own registry workload and time-management data and to develop staffing guidelines.

  10. Synergy of climate change and local pressures on saltwater intrusion in heterogeneous coastal aquifers

    Science.gov (United States)

    Abou Najm, M.; Safi, A.; El-Fadel, M.; Doummar, J.; Alameddine, I.

    2016-12-01

    The relative importance of climate change induced sea level rise on the salinization of a highly urbanized karstified coastal aquifers were compared with non-sustainable pumping. A 3D variable-density groundwater flow and solute transport model was used to predict the displacement of the saltwater-freshwater interface in a pilot aquifer located along the Eastern Mediterranean. The results showed that the influence of sea level rise was marginal when compared with the encroachment of salinity associated with anthropogenic abstraction. Model predictions of salinity mass and volumetric displacement of the interface corresponding to a long-term monthly transient model showed that the saltwater intrusion dynamic is highly sensitive to change in the abstraction rates which were estimated based on combinations of water consumption rates and population growth rates. Salinity encroachment, however, appeared to be more sensitive to water consumption rates in comparison to population growth rates, where a 50% increase in the rate of former led to four times more intrusion as compared to an equivalent increase in population growth rate over 20 years. Coupling both increase in population growth and increased consumption rates had a synergistic effect that aggravated the intrusion beyond the sum of the individual impacts. Adaptation strategies targeting a decrease in groundwater exploitation proved to be effective in retarding the intrusion.

  11. Analysis of impact of temperature and saltwater on Nannochloropsis salina bio-oil production by ultra high resolution APCI FT-ICR MS

    KAUST Repository

    Sanguineti, Michael Mario

    2015-05-01

    Concentrated Nannochloropsis salina paste was reconstituted in distilled water and synthetic saltwater and processed at 250°C and 300°C via hydrothermal liquefaction. The resulting bio-oils yielded a diverse distribution of product classes, as analyzed by ultra high resolution APCI FT-ICR MS. The organic fractions were analyzed and both higher temperatures and distilled water significantly increase the number of total compounds present and the number of product classes. Major bio-oil products consisted of N1O1, hydrocarbon, and O2 classes, while O1, O4, S1, N1O2, and N2O2 classes represented the more significant minor classes. Both chlorine and sulfur containing compounds were detected in both distilled and saltwater reactions, while fewer numbers of chlorine and sulfur containing products were present in the organic fraction of the saltwater reactions. Further refinement to remove the chlorine and sulfur contents appears necessary with marine microalgal bio-oils produced via hydrothermal liquefaction. The higher heating value (MJ/kg) as calculated by the Boie equation of classes of interest in the bio-oil reveals a significant potential of algal hydrothermal liquefaction products as a sustainable and renewable fuel feedstock. © 2015.

  12. Review of patient registries in dermatology.

    Science.gov (United States)

    DiMarco, Gabriella; Hill, Dane; Feldman, Steven R

    2016-10-01

    Patient registries are datasets containing information on patients with a particular disease or patients who are undergoing a specific treatment. Our objective was to search for and catalog the types of registries being used in dermatology and investigate their characteristics and uses. We searched Google, the Registry of Patient Registries, Orphanet, and ClinicalTrials.gov to compile a list of dermatology disease registries. We also conducted a literature review on the uses of dermatology registries using PubMed. We identified 48 dermatology patient registries, with 23 distinct diseases represented. We also identified 11 registries used for postmarketing surveillance of skin disease. Our search was limited to registries in English. Registries are commonly used for the study of rare dermatologic diseases and for postsurveillance monitoring of systemic therapies in more common dermatologic diseases, such as psoriasis. Copyright © 2016 American Academy of Dermatology, Inc. Published by Elsevier Inc. All rights reserved.

  13. Groundwater Modeling in Coastal Arid Regions Under the Influence of Marine Saltwater Intrusion

    Science.gov (United States)

    Walther, Marc; Kolditz, Olaf; Grundmann, Jens; Liedl, Rudolf

    2010-05-01

    The optimization of an aquifer's "safe yield", especially within agriculturally used regions, is one of the fundamental tasks for nowaday's groundwater management. Due to the limited water ressources in arid regions, conflict of interests arise that need to be evaluated using scenario analysis and multicriterial optimization approaches. In the context of the government-financed research project "International Water Research Alliance Saxony" (IWAS), the groundwater quality for near-coastal, agriculturally used areas is investigated under the influence of marine saltwater intrusion. Within the near-coastal areas of the study region, i.e. the Batinah plains of Northern Oman, an increasing agricultural development could be observed during the recent decades. Simultaneously, a constant lowering of the groundwater table was registered, which is primarily due to the uncontrolled and unsupervised mining of the aquifers for the local agricultural irrigation. Intensively decreased groundwater levels, however, cause an inversion of the hydraulic gradient which is naturally aligned towards the coast. This, in turn,leads to an intrusion of marine saltwater flowing inland, endangering the productivity of farms near the coast. Utilizing the modeling software package OpenGeoSys, which has been developed and constantly enhanced by the Department of Environmental Informatics at the Helmholtz Centre for Environmental Research Leipzig (UFZ; Kolditz et al., 2008), a three-dimensional, density-dependent model including groundwater flow and mass transport is currently being built up. The model, comprehending three selected coastal wadis of interest, shall be used to investigate different management scenarios. The main focus of the groundwater modelling are the optimization of well positions and pumping schemes as well as the coupling with a surface runoff model, which is also used for the determination of the groundwater recharge due to wadi runoff downstream of retention dams. Based on

  14. Saltwater contamination in the managed low-lying farmland of the Venice coast, Italy: An assessment of vulnerability

    Energy Technology Data Exchange (ETDEWEB)

    Da Lio, Cristina, E-mail: cristina.dalio@ve.ismar.cnr.it [Institute of Marine Sciences, National Research Council, Arsenale — Tesa 104, Castello 2737/F, 30122 Venezia (Italy); Carol, Eleonora, E-mail: eleocarol@fcnym.unlp.edu.ar [Consejo Nacional de Investigaciones Científicas y Técnicas (CONICET), Cátedra de Hidrología General, Facultad de Ciencias Naturales y Museo, Universidad Nacional de La Plata 64 n" o3 La Plata (Argentina); Kruse, Eduardo, E-mail: kruse@fcnym.unlp.edu.ar [Consejo Nacional de Investigaciones Científicas y Técnicas (CONICET), Cátedra de Hidrología General, Facultad de Ciencias Naturales y Museo, Universidad Nacional de La Plata 64 n" o3 La Plata (Argentina); Teatini, Pietro, E-mail: pietro.teatini@unipd.it [Institute of Marine Sciences, National Research Council, Arsenale — Tesa 104, Castello 2737/F, 30122 Venezia (Italy); Dept. of Civil, Architectural and Environmental Engineering, University of Padova, Via Trieste 63, 35121 Padova (Italy); Tosi, Luigi, E-mail: luigi.tosi@ismar.cnr.it [Institute of Marine Sciences, National Research Council, Arsenale — Tesa 104, Castello 2737/F, 30122 Venezia (Italy)

    2015-11-15

    The original morphology and hydrogeology of many low-lying coastlands worldwide have been significantly modified over the last century through river diversion, embankment built-up, and large-scale land reclamation projects. This led to a progressive shifting of the groundwater–surficial water exchanges from naturally to anthropogenically driven. In this human-influenced hydrologic landscape, the saltwater contamination usually jeopardizes the soil productivity. In the coastland south of Venice (Italy), several well log measurements, chemical and isotope analyses have been performed over the last decade to characterize the occurrence of the salt contamination. The processing of this huge dataset highlights a permanent variously-shaped saline contamination up to 20 km inland, with different conditions in relation with the various geomorphological features of the area. The results point out the important role of the land reclamation in shaping the present-day salt contamination and reveal the contribution of precipitation, river discharge, lagoon and sea water to the shallow groundwater in the various coastal sectors. Moreover, an original vulnerability map to salt contamination in relation to the farmland productivity has been developed taking into account the electrical conductivity of the upper aquifer in the worst condition, the ground elevation, and the distance from salt and fresh surface water sources. Finally, the study allows highlighting the limit of traditional investigations in monitoring saltwater contamination at the regional scale in managed Holocene coastal environments. Possible improvements are outlined. - Highlights: • Land reclamation shapes the present saltwater contamination in the Venice coastland. • Natural and anthropogenic forcings drive the seawater flow in shallow aquifers. • Hydro-geophysical–geochemical investigations highlight the groundwater origin. • The vulnerability of the farmland to salt contamination extents up to 20

  15. Saltwater contamination in the managed low-lying farmland of the Venice coast, Italy: An assessment of vulnerability

    International Nuclear Information System (INIS)

    Da Lio, Cristina; o3 La Plata (Argentina))" data-affiliation=" (Consejo Nacional de Investigaciones Científicas y Técnicas (CONICET), Cátedra de Hidrología General, Facultad de Ciencias Naturales y Museo, Universidad Nacional de La Plata 64 no3 La Plata (Argentina))" >Carol, Eleonora; o3 La Plata (Argentina))" data-affiliation=" (Consejo Nacional de Investigaciones Científicas y Técnicas (CONICET), Cátedra de Hidrología General, Facultad de Ciencias Naturales y Museo, Universidad Nacional de La Plata 64 no3 La Plata (Argentina))" >Kruse, Eduardo; Teatini, Pietro; Tosi, Luigi

    2015-01-01

    The original morphology and hydrogeology of many low-lying coastlands worldwide have been significantly modified over the last century through river diversion, embankment built-up, and large-scale land reclamation projects. This led to a progressive shifting of the groundwater–surficial water exchanges from naturally to anthropogenically driven. In this human-influenced hydrologic landscape, the saltwater contamination usually jeopardizes the soil productivity. In the coastland south of Venice (Italy), several well log measurements, chemical and isotope analyses have been performed over the last decade to characterize the occurrence of the salt contamination. The processing of this huge dataset highlights a permanent variously-shaped saline contamination up to 20 km inland, with different conditions in relation with the various geomorphological features of the area. The results point out the important role of the land reclamation in shaping the present-day salt contamination and reveal the contribution of precipitation, river discharge, lagoon and sea water to the shallow groundwater in the various coastal sectors. Moreover, an original vulnerability map to salt contamination in relation to the farmland productivity has been developed taking into account the electrical conductivity of the upper aquifer in the worst condition, the ground elevation, and the distance from salt and fresh surface water sources. Finally, the study allows highlighting the limit of traditional investigations in monitoring saltwater contamination at the regional scale in managed Holocene coastal environments. Possible improvements are outlined. - Highlights: • Land reclamation shapes the present saltwater contamination in the Venice coastland. • Natural and anthropogenic forcings drive the seawater flow in shallow aquifers. • Hydro-geophysical–geochemical investigations highlight the groundwater origin. • The vulnerability of the farmland to salt contamination extents up to 20

  16. A web-based, patient driven registry for Angelman syndrome: the global Angelman syndrome registry.

    Science.gov (United States)

    Napier, Kathryn R; Tones, Megan; Simons, Chloe; Heussler, Helen; Hunter, Adam A; Cross, Meagan; Bellgard, Matthew I

    2017-08-01

    Angelman syndrome (AS) is a rare neurodevelopmental disorder that is characterised by severe global developmental delays, ataxia, loss of speech, epilepsy, sleep disorders, and a happy disposition. There is currently no cure for AS, though several pharmaceutical companies are anticipating drug trials for new therapies to treat AS. The Foundation for Angelman Therapeutics (FAST) Australia therefore identified a need for a global AS patient registry to identify patients for recruitment for clinical trials.The Global AS Registry was deployed in September 2016 utilising the Rare Disease Registry Framework, an open-source tool that enables the efficient creation and management of patient registries. The Global AS Registry is web-based and allows parents and guardians worldwide to register, provide informed consent, and enter data on individuals with AS. 286 patients have registered in the first 8 months since deployment.We demonstrate the successful deployment of the first patient-driven global registry for AS. The data generated from the Global AS Registry will be crucial in identifying patients suitable for clinical trials and in informing research that will identify treatments for AS, and ultimately improve the lives of individuals and their families living with AS.

  17. Meta-analysis of individual registry results enhances international registry collaboration.

    Science.gov (United States)

    Paxton, Elizabeth W; Mohaddes, Maziar; Laaksonen, Inari; Lorimer, Michelle; Graves, Stephen E; Malchau, Henrik; Namba, Robert S; Kärrholm, John; Rolfson, Ola; Cafri, Guy

    2018-03-28

    Background and purpose - Although common in medical research, meta-analysis has not been widely adopted in registry collaborations. A meta-analytic approach in which each registry conducts a standardized analysis on its own data followed by a meta-analysis to calculate a weighted average of the estimates allows collaboration without sharing patient-level data. The value of meta-analysis as an alternative to individual patient data analysis is illustrated in this study by comparing the risk of revision of porous tantalum cups versus other uncemented cups in primary total hip arthroplasties from Sweden, Australia, and a US registry (2003-2015). Patients and methods - For both individual patient data analysis and meta-analysis approaches a Cox proportional hazard model was fit for time to revision, comparing porous tantalum (n = 23,201) with other uncemented cups (n = 128,321). Covariates included age, sex, diagnosis, head size, and stem fixation. In the meta-analysis approach, treatment effect size (i.e., Cox model hazard ratio) was calculated within each registry and a weighted average for the individual registries' estimates was calculated. Results - Patient-level data analysis and meta-analytic approaches yielded the same results with the porous tantalum cups having a higher risk of revision than other uncemented cups (HR (95% CI) 1.6 (1.4-1.7) and HR (95% CI) 1.5 (1.4-1.7), respectively). Adding the US cohort to the meta-analysis led to greater generalizability, increased precision of the treatment effect, and similar findings (HR (95% CI) 1.6 (1.4-1.7)) with increased risk of porous tantalum cups. Interpretation - The meta-analytic technique is a viable option to address privacy, security, and data ownership concerns allowing more expansive registry collaboration, greater generalizability, and increased precision of treatment effects.

  18. Consequences and mitigation of saltwater intrusion induced by short-circuiting during aquifer storage and recovery in a coastal subsurface

    Science.gov (United States)

    Gerardus Zuurbier, Koen; Stuyfzand, Pieter Jan

    2017-02-01

    Coastal aquifers and the deeper subsurface are increasingly exploited. The accompanying perforation of the subsurface for those purposes has increased the risk of short-circuiting of originally separated aquifers. This study shows how this short-circuiting negatively impacts the freshwater recovery efficiency (RE) during aquifer storage and recovery (ASR) in coastal aquifers. ASR was applied in a shallow saltwater aquifer overlying a deeper, confined saltwater aquifer, which was targeted for seasonal aquifer thermal energy storage (ATES). Although both aquifers were considered properly separated (i.e., a continuous clay layer prevented rapid groundwater flow between both aquifers), intrusion of deeper saltwater into the shallower aquifer quickly terminated the freshwater recovery. The presumable pathway was a nearby ATES borehole. This finding was supported by field measurements, hydrochemical analyses, and variable-density solute transport modeling (SEAWAT version 4; Langevin et al., 2007). The potentially rapid short-circuiting during storage and recovery can reduce the RE of ASR to null. When limited mixing with ambient groundwater is allowed, a linear RE decrease by short-circuiting with increasing distance from the ASR well within the radius of the injected ASR bubble was observed. Interception of deep short-circuiting water can mitigate the observed RE decrease, although complete compensation of the RE decrease will generally be unattainable. Brackish water upconing from the underlying aquitard towards the shallow recovery wells of the ASR system with multiple partially penetrating wells (MPPW-ASR) was observed. This leakage may lead to a lower recovery efficiency than based on current ASR performance estimations.

  19. Converged Registries Solution (CRS)

    Data.gov (United States)

    Department of Veterans Affairs — The Converged Registries platform is a hardware and software architecture designed to host individual patient registries and eliminate duplicative development effort...

  20. Review of U.S. registries for psoriasis.

    Science.gov (United States)

    Amin, Mina; No, Daniel J; Wu, Jashin J

    2017-12-01

    Patient registries are databases comprised of standardized clinical data for a specific population of patients with a particular disease or medical condition. Information from patient registries allows clinicians to assess long-lasting outcomes in patients with a specific disease, such as psoriasis. Our primary objective was to identify available psoriasis registries in the United States (U.S.) and evaluate the application of patient registries compared to clinical trials. We searched Google, the Registry of Patient Registries, Orphanet and ClinicalTrials.gov to create a list of U.S. psoriasis registries. We also performed a literature review on the application of psoriasis registries using PubMed. We identified 6 psoriasis patient registries in the United States. Patient registries are frequently used for psoriasis in the U.S. and provide important information about the safety, efficacy and long-term effects of systemic therapies.

  1. Assessing angler effort, catch, and harvest and the efficacy of a use-estimation system on a multi-lake fishery in middle Georgia

    Science.gov (United States)

    Roop, Hunter J.; Poudyal, Neelam C.; Jennings, Cecil A.

    2018-01-01

    Creel surveys are valuable tools in recreational fisheries management. However, multiple‐impoundment fisheries of complex spatial structure can complicate survey designs and pose logistical challenges for management agencies. Marben Public Fishing Area in Mansfield, GA is a multi‐impoundment fishery with many access points, and these features prevent or complicate use of traditional on‐site contact methods such as standard roving‐ or access‐point designs because many anglers may be missed during the survey process. Therefore, adaptation of a traditional survey method is often required for sampling this special case of multi‐lake fisheries to develop an accurate fishery profile. Accordingly, a modified non‐uniform probability roving creel survey was conducted at the Marben PFA during 2013 to estimate fishery characteristics relating to fishing effort, catch, and fish harvest. Monthly fishing effort averaged 7,523 angler‐hours (h) (SD = 5,956) and ranged from 1,301 h (SD = 562) in December to 21,856 h (SD = 5909) in May. A generalized linear mixed model was used to determine that angler catch and harvest rates were significantly higher in the spring and summer (all p < 0.05) than in the other seasons, but did not vary by fishing location. Our results demonstrate the utility of modifying existing creel methodology for monitoring small, spatially complex, intensely managed impoundments that support quality recreational fisheries and provide a template for the assessment and management of similar regional fisheries.

  2. Analysis of impact of temperature and saltwater on Nannochloropsis salina bio-oil production by ultra high resolution APCI FT-ICR MS

    KAUST Repository

    Sanguineti, Michael Mario; Hourani, Nadim; Witt, Matthí as; Sarathy, Mani; Thomsen, Laurenz A.; Kuhnert, Nikolai

    2015-01-01

    Concentrated Nannochloropsis salina paste was reconstituted in distilled water and synthetic saltwater and processed at 250°C and 300°C via hydrothermal liquefaction. The resulting bio-oils yielded a diverse distribution of product classes

  3. 62 years of population dynamics of European perch (Perca fluviatilis) in a mesotrophic lake tracked using angler diaries: The role of commercial fishing, predation and temperature

    DEFF Research Database (Denmark)

    Skov, Christian; Jansen, Teunis; Arlinghaus, Robert

    2017-01-01

    (abundance, mean size and record size) of European perch (Perca fluviatilis L.) in relation to the impact of three commercial fishers with different fishing strategies, pike (Esox lucius L.) predation and temperature. We found that anglers’ harvest rates of perch varied by a factor of 10 over time......, but it also underlines the need for supplementary data on biotic and abiotic factors to reach the full potential of angler diary data...

  4. Managing saltwater intrusion in coastal arid regions and its societal implications for agriculture

    Directory of Open Access Journals (Sweden)

    J. Grundmann

    2016-05-01

    Full Text Available Coastal aquifers in arid and semiarid regions are particularly at risk due to intrusion of salty marine water. Since groundwater is predominantly used in irrigated agriculture, its excessive pumping – above the natural rate of replenishment – strengthen the intrusion process. Using this increasingly saline water for irrigation, leads to a destruction of valuable agricultural resources and the economic basis of farmers and their communities. The limitation of resources (water and soil in these regions requires a societal adaptation and change in behaviour as well as the development of appropriate management strategies for a transition towards stable and sustainable future hydrosystem states. Besides a description of the system dynamics and the spatial consequences of adaptation on the resources availability, the contribution combines results of an empirical survey with stakeholders and physically based modelling of the groundwater-agriculture hydrosystem interactions. This includes an analysis of stakeholders' (farmers and decision makers behaviour and opinions regarding several management interventions aiming on water demand and water resources management as well as the thinking of decision makers how farmers will behave. In this context, the technical counter measures to manage the saltwater intrusion by simulating different groundwater pumping strategies and scenarios are evaluated from the economic and social point of view and if the spatial variability of the aquifer's hydrogeology is taken into consideration. The study is exemplarily investigated for the south Batinah region in the Sultanate of Oman, which is affected by saltwater intrusion into a coastal aquifer system due to excessive groundwater withdrawal for irrigated agriculture.

  5. Methods for culturing saltwater rotifers (Brachionus plicatilis) for rearing larval zebrafish.

    Science.gov (United States)

    Lawrence, Christian; Sanders, Erik; Henry, Eric

    2012-09-01

    The saltwater rotifer, Brachionus plicatilis, is widely used in the aquaculture industry as a prey item for first-feeding fishes due to its ease of culture, small size, rapid reproductive rate, and amenability to enrichment with nutrients. Despite the distinct advantages of this approach, rotifers have only been sporadically utilized for rearing larval zebrafish, primarily because of the common misconception that maintaining cultures of rotifers is difficult and excessively time-consuming. Here we present simple methods for maintaining continuous cultures of rotifers capable of supporting even the very largest zebrafish aquaculture facility, with minimal investments in materials, time, labor, and space. Examples of the methods' application in one large, existing facility is provided, and troubleshooting of common problems is discussed.

  6. Nordic registry-based cohort studies: Possibilities and pitfalls when combining Nordic registry data.

    Science.gov (United States)

    Maret-Ouda, John; Tao, Wenjing; Wahlin, Karl; Lagergren, Jesper

    2017-07-01

    All five Nordic countries (Denmark, Finland, Iceland, Norway and Sweden) have nationwide registries with similar data structure and validity, as well as personal identity numbers enabling linkage between registries. These resources provide opportunities for medical research that is based on large registry-based cohort studies with long and complete follow-up. This review describes practical aspects, opportunities and challenges encountered when setting up all-Nordic registry-based cohort studies. Relevant articles describing registries often used for medical research in the Nordic countries were retrieved. Further, our experiences of conducting this type of study, including planning, acquiring permissions, data retrieval and data cleaning and handling, and the possibilities and challenges we have encountered are described. Combining data from the Nordic countries makes it possible to create large and powerful cohorts. The main challenges include obtaining all permissions within each country, usually in the local language, and retrieving the data. These challenges emphasise the importance of having experienced collaborators within each country. Following the acquisition of data, data management requires the understanding of the differences between the variables to be used in the various countries. A concern is the long time required between initiation and completion. Nationwide Nordic registries can be combined into cohorts with high validity and statistical power, but the considerable expertise, workload and time required to complete such cohorts should not be underestimated.

  7. The EuroMyositis registry

    DEFF Research Database (Denmark)

    Lilleker, James B; Vencovsky, Jiri; Wang, Guochun

    2018-01-01

    AIMS: The EuroMyositis Registry facilitates collaboration across the idiopathic inflammatory myopathy (IIM) research community. This inaugural report examines pooled Registry data. METHODS: Cross-sectional analysis of IIM cases from 11 countries was performed. Associations between clinical subtyp...

  8. Danish Hip Arthroscopy Registry

    DEFF Research Database (Denmark)

    Mygind-Klavsen, Bjarne; Grønbech Nielsen, Torsten; Maagaard, Niels

    2016-01-01

    Danish Hip Arthroscopy Registry (DHAR) was initiated in 2012 as a web-based prospective registry. The purpose of this study was to evaluate and report the epidemiologic and perioperative data of the first 2000 procedures in a Danish hip arthroscopy population and to describe the development of DHAR...... was 0.65 and HAGOS sub-scores were 51 (pain), 49 (symptoms), 53 (ADL), 35 (sport), 20 (physical activity) and 29, respectively. We conclude that patients undergoing hip arthroscopy report considerable pain, loss of function, reduced level of activity and reduced quality-of-life prior to surgery....... The problems with development and maintaining a large clinical registry are described and further studies are needed to validate data completeness. We consider the development of a national clinical registry for hip arthroscopy as a successful way of developing and maintaining a valuable clinical...

  9. [Influence of saltwater irrigation on the yield and quality of Cynodon dactylon under desert conditions].

    Science.gov (United States)

    Zhou, Ruilian; Dov, Paternak; Zhao, Halin

    2002-08-01

    Responses of six varieties (Suwannee, Coast cross, Tifton44, Tifton68, Tifton78 and Tifton85) of Cynodon dactylon to irrigation-water salinity were investigated in field by means of a double line source experimental design. The digestibility of the grass by goat was analyzed using the rumen gastric justice digestion method. The results showed that the six varieties grew well, and had a high yield of fresh grass when eletro-conductivity (Eci) Cynodon dactylon were not effected by saltwater irrigation.

  10. Iranian Joint Registry(Iranian National Hip and Knee Arthroplasty Registry

    Directory of Open Access Journals (Sweden)

    Hamidreza Aslani

    2016-04-01

    Full Text Available Periodic evaluation and monitoring the health and economic outcome of joint replacement surgery is a common and popular process under the territory of joint registries in many countries. In this article we introduce the methodology used for the foundation of the National Iranian Joint Registry (IJR with a joint collaboration of the Social Security Organization (SSO and academic research departments considering the requirements of the Iran’s Ministry of Health and Education.

  11. [Types of medical registries - definitions, methodological aspects and quality of the scientific work with registries].

    Science.gov (United States)

    Mathis-Edenhofer, Stefan; Piso, Brigitte

    2011-12-01

    This work presents a comprehensive list of registry definitions including broader and narrower definitions. Compared to each other different methodological issues can be identified. Some of these issues are common for all registry types; some can be assigned more easily to a specific registry type. Instruments for evaluating the quality of registers reflect many of the mentioned aspects. Generally, and especially at registers with a descriptive or exploratory research dimension it is important to consider their intended purpose and in about it was achieved. This includes, for instance, whether the purpose and the methodology are coordinated. From the start of registration an initiator should be - based on the purpose - aware of the methodological dimension of the registry. This helps to apply the correct type of the registry, the appropriate guidance and, ultimately, the arguments for the effort (cost-benefit ratio).

  12. Immunization registries in the EMR Era

    Science.gov (United States)

    Stevens, Lindsay A.; Palma, Jonathan P.; Pandher, Kiran K.; Longhurst, Christopher A.

    2013-01-01

    Background: The CDC established a national objective to create population-based tracking of immunizations through regional and statewide registries nearly 2 decades ago, and these registries have increased coverage rates and reduced duplicate immunizations. With increased adoption of commercial electronic medical records (EMR), some institutions have used unidirectional links to send immunization data to designated registries. However, access to these registries within a vendor EMR has not been previously reported. Purpose: To develop a visually integrated interface between an EMR and a statewide immunization registry at a previously non-reporting hospital, and to assess subsequent changes in provider use and satisfaction. Methods: A group of healthcare providers were surveyed before and after implementation of the new interface. The surveys addressed access of the California Immunization Registry (CAIR), and satisfaction with the availability of immunization information. Information Technology (IT) teams developed a “smart-link” within the electronic patient chart that provides a single-click interface for visual integration of data within the CAIR database. Results: Use of the tool has increased in the months since its initiation, and over 20,000 new immunizations have been exported successfully to CAIR since the hospital began sharing data with the registry. Survey data suggest that providers find this tool improves workflow and overall satisfaction with availability of immunization data. (p=0.009). Conclusions: Visual integration of external registries into a vendor EMR system is feasible and improves provider satisfaction and registry reporting. PMID:23923096

  13. Cohort Profile : The National Academy of Sciences-National Research Council Twin Registry (NAS-NRC Twin Registry)

    NARCIS (Netherlands)

    Gatz, Margaret; Harris, Jennifer R.; Kaprio, Jaakko; McGue, Matt; Smith, Nicholas L.; Snieder, Harold; Spiro, Avron; Butler, David A.

    The National Academy of Sciences-National Research Council Twin Registry (NAS-NRC Twin Registry) is a comprehensive registry of White male twin pairs born in the USA between 1917 and 1927, both of the twins having served in the military. The purpose was medical research and ultimately improved

  14. A Registry Framework Enabling Patient-Centred Care.

    Science.gov (United States)

    Bellgard, Matthew I; Napier, Kathryn; Render, Lee; Radochonski, Maciej; Lamont, Leanne; Graham, Caroline; Wilton, Steve D; Fletcher, Sue; Goldblatt, Jack; Hunter, Adam A; Weeramanthri, Tarun

    2015-01-01

    Clinical decisions rely on expert knowledge that draws on quality patient phenotypic and physiological data. In this regard, systems that can support patient-centric care are essential. Patient registries are a key component of patient-centre care and can come in many forms such as disease-specific, recruitment, clinical, contact, post market and surveillance. There are, however, a number of significant challenges to overcome in order to maximise the utility of these information management systems to facilitate improved patient-centred care. Registries need to be harmonised regionally, nationally and internationally. However, the majority are implemented as standalone systems without consideration for data standards or system interoperability. Hence the task of harmonisation can become daunting. Fortunately, there are strategies to address this. In this paper, a disease registry framework is outlined that enables efficient deployment of national and international registries that can be modified dynamically as registry requirements evolve. This framework provides a basis for the development and implementation of data standards and enables patients to seamlessly belong to multiple registries. Other significant advances include the ability for registry curators to create and manage registries themselves without the need to contract software developers, and the concept of a registry description language for ease of registry template sharing.

  15. Registries in European post-marketing surveillance

    DEFF Research Database (Denmark)

    Bouvy, Jacoline C; Blake, Kevin; Slattery, Jim

    2017-01-01

    at gaining further insight into the European Medicines Agency's (EMA) requests for new registries and registry studies using existing registries and to review the experience gained in their conduct. METHODS: European Public Assessment Reports were consulted to identify products for which a request...

  16. Contextualized B2B Registries

    OpenAIRE

    Radetzki, U; Boniface, M.J.; Surridge, M.

    2007-01-01

    Abstract. Service discovery is a fundamental concept underpinning the move towards dynamic service-oriented business partnerships. The business process for integrating service discovery and underlying registry technologies into busi-ness relationships, procurement and project management functions has not been examined and hence existing Web Service registries lack capabilities required by business today. In this paper we present a novel contextualized B2B registry that supports dynamic regist...

  17. A modeling study of saltwater intrusion in the Andarax delta area using multiple data sources

    DEFF Research Database (Denmark)

    Antonsson, Arni Valur; Engesgaard, Peter Knudegaard; Jorreto, Sara

    context. The validity of a conceptual model is determined by different factors, where both data quantity and quality is of crucial importance. Often, when dealing with saltwater intrusion, data is limited. Therefore, using different sources (and types) of data can be beneficial and increase......In groundwater model development, construction of the conceptual model is one of the (initial and) critical aspects that determines the model reliability and applicability in terms of e.g. system (hydrogeological) understanding, groundwater quality predictions, and general use in water resources...

  18. Glocal clinical registries: pacemaker registry design and implementation for global and local integration--methodology and case study.

    Directory of Open Access Journals (Sweden)

    Kátia Regina da Silva

    Full Text Available The ability to apply standard and interoperable solutions for implementing and managing medical registries as well as aggregate, reproduce, and access data sets from legacy formats and platforms to advanced standard formats and operating systems are crucial for both clinical healthcare and biomedical research settings.Our study describes a reproducible, highly scalable, standard framework for a device registry implementation addressing both local data quality components and global linking problems.We developed a device registry framework involving the following steps: (1 Data standards definition and representation of the research workflow, (2 Development of electronic case report forms using REDCap (Research Electronic Data Capture, (3 Data collection according to the clinical research workflow and, (4 Data augmentation by enriching the registry database with local electronic health records, governmental database and linked open data collections, (5 Data quality control and (6 Data dissemination through the registry Web site. Our registry adopted all applicable standardized data elements proposed by American College Cardiology / American Heart Association Clinical Data Standards, as well as variables derived from cardiac devices randomized trials and Clinical Data Interchange Standards Consortium. Local interoperability was performed between REDCap and data derived from Electronic Health Record system. The original data set was also augmented by incorporating the reimbursed values paid by the Brazilian government during a hospitalization for pacemaker implantation. By linking our registry to the open data collection repository Linked Clinical Trials (LinkedCT we found 130 clinical trials which are potentially correlated with our pacemaker registry.This study demonstrates how standard and reproducible solutions can be applied in the implementation of medical registries to constitute a re-usable framework. Such approach has the potential to

  19. Current situation and challenge of registry in China.

    Science.gov (United States)

    Zhang, Yang; Feng, Yuji; Qu, Zhi; Qi, Yali; Zhan, Siyan

    2014-09-01

    Increasing emphasis has been placed on registries for an organized system used in developing clinical research to improve health care. China has sufficient data that can be applied broadly, but the heterogeneity and irregularity of registries limit their applicability. This article aims to describe the status of registries in China and the related challenges. Patient registries for observational studies were retrieved from the International Clinical Trials Registry to quantitatively evaluate the number of comparatively high-quality registries in China. A literature search was also performed to provide support and updates. A total of 64 patient registries were retrieved from ClinicalTrials.gov using disease, product, and health service as criteria. The sample sizes ranged from 15 to 30,400, with only 12 registries marked as completed. This article describes and compares the detailed information in many aspects. The efficient use of registries has already made considerable progress in China; however, registries still require standardization, high-quality transition, and coordinated development.

  20. Clinical Case Registries: Simultaneous Local and National Disease Registries for Population Quality Management

    Science.gov (United States)

    Backus, Lisa I.; Gavrilov, Sergey; Loomis, Timothy P.; Halloran, James P.; Phillips, Barbara R.; Belperio, Pamela S.; Mole, Larry A.

    2009-01-01

    The Department of Veterans Affairs (VA) has a system-wide, patient-centric electronic medical record system (EMR) within which the authors developed the Clinical Case Registries (CCR) to support population-centric delivery and evaluation of VA medical care. To date, the authors have applied the CCR to populations with human immunodeficiency virus (HIV) and hepatitis C virus (HCV). Local components use diagnosis codes and laboratory test results to identify patients who may have HIV or HCV and support queries on local care delivery with customizable reports. For each patient in a local registry, key EMR data are transferred via HL7 messaging to a single national registry. From 128 local registry systems, over 60,000 and 320,000 veterans in VA care have been identified as having HIV and HCV, respectively, and entered in the national database. Local and national reports covering demographics, resource usage, quality of care metrics and medication safety issues have been generated. PMID:19717794

  1. [Trauma registry and injury].

    Science.gov (United States)

    Shapira, S C

    2001-10-01

    The trauma registry network constitutes an essential database in every injury prevention system. In order to rationally estimate the extent of injury in general, and injuries from traffic accidents in particular, the trauma registry systems should contain the most comprehensive and broad database possible, in line with the operational definitions. Ideally, the base of the injury pyramid should also include mild injuries and even "near-misses". The Israeli National Trauma Registry has come a long way in the last few years. The eventual inclusion of all trauma centers in Israel will enable the establishment of a firm base for the allocation of resources by decision-makers.

  2. The Qingdao Twin Registry

    DEFF Research Database (Denmark)

    Duan, Haiping; Ning, Feng; Zhang, Dongfeng

    2013-01-01

    In 1998, the Qingdao Twin Registry was initiated as the main part of the Chinese National Twin Registry. By 2005, a total of 10,655 twin pairs had been recruited. Since then new twin cohorts have been sampled, with one longitudinal cohort of adolescent twins selected to explore determinants of me...

  3. The value of trauma registries.

    Science.gov (United States)

    Moore, Lynne; Clark, David E

    2008-06-01

    Trauma registries are databases that document acute care delivered to patients hospitalised with injuries. They are designed to provide information that can be used to improve the efficiency and quality of trauma care. Indeed, the combination of trauma registry data at regional or national levels can produce very large databases that allow unprecedented opportunities for the evaluation of patient outcomes and inter-hospital comparisons. However, the creation and upkeep of trauma registries requires a substantial investment of money, time and effort, data quality is an important challenge and aggregated trauma data sets rarely represent a population-based sample of trauma. In addition, trauma hospitalisations are already routinely documented in administrative hospital discharge databases. The present review aims to provide evidence that trauma registry data can be used to improve the care dispensed to victims of injury in ways that could not be achieved with information from administrative databases alone. In addition, we will define the structure and purpose of contemporary trauma registries, acknowledge their limitations, and discuss possible ways to make them more useful.

  4. On Domain Registries and Website Content

    DEFF Research Database (Denmark)

    Schwemer, Sebastian Felix

    2018-01-01

    such as Internet access service providers, hosting platforms, and websites that link to content. This article shows that in recent years, however, that the (secondary) liability of domain registries and registrars, and more specifically country code top-level domain registries (ccTLDs) for website content, has...... been tested in several EU Member States. The article investigates tendencies in the national lower-court jurisprudence and explores to what extent the liability exemption regime of the E-Commerce Directive applies to domain registries. The analysis concludes that whereas domain registries fall under...

  5. EMI Registry Development Plan

    CERN Document Server

    Memon, S.; Szigeti, G.; Field, L.

    2012-01-01

    This documents describes the overall development plan of the EMI Registry product, the plan focuses on the realisation of the EMI Registry specification as defined in the document. It is understood that during the course of the development phase the specification will likely evolve and the changes will be fed into the specification document.

  6. Hydrogeology, water quality, and saltwater intrusion in the Upper Floridan Aquifer in the offshore area near Hilton Head Island, South Carolina, and Tybee Island, Georgia, 1999-2002

    Science.gov (United States)

    Falls, W. Fred; Ransom, Camille; Landmeyer, James E.; Reuber, Eric J.; Edwards, Lucy E.

    2005-01-01

    To assess the hydrogeology, water quality, and the potential for saltwater intrusion in the offshore Upper Floridan aquifer, a scientific investigation was conducted near Tybee Island, Georgia, and Hilton Head Island, South Carolina. Four temporary wells were drilled at 7, 8, 10, and 15 miles to the northeast of Tybee Island, and one temporary well was drilled in Calibogue Sound west of Hilton Head Island. The Upper Floridan aquifer at the offshore and Calibogue sites includes the unconsolidated calcareous quartz sand, calcareous quartz sandstone, and sandy limestone of the Oligocene Lazaretto Creek and Tiger Leap Formations, and the limestone of the late Eocene Ocala Limestone and middle Avon Park Formation. At the 7-, 10-, and 15-mile sites, the upper confining unit between the Upper Floridan and surficial aquifers correlates to the Miocene Marks Head Formation. Paleochannel incisions have completely removed the upper confining unit at the Calibogue site and all but a 0.8-foot-thick interval of the confining unit at the 8-mile site, raising concern about the potential for saltwater intrusion through the paleochannel-fill sediments at these two sites. The paleochannel incisions at the Calibogue and 8-mile sites are filled with fine- and coarse-grained sediments, respectively. The hydrogeologic setting and the vertical hydraulic gradients at the 7- and 10-mile sites favored the absence of saltwater intrusion during predevelopment. After decades of onshore water use in Georgia and South Carolina, the 0-foot contour in the regional cone of depression of the Upper Floridan aquifer is estimated to have been at the general location of the 7- and 10-mile sites by the mid-1950s and at or past the 15-mile site by the 1980s. The upward vertical hydraulic gradient reversed, but the presence of more than 17 feet of upper confining unit impeded the downward movement of saltwater from the surficial aquifer to the Upper Floridan aquifer at the 7- and 10-mile sites. At the 10

  7. Modeling the Effects of Storm Surge from Hurricane Jeanne on Saltwater Intrusion into the Surficial Aquifer, East-Central Florida (USA)

    Science.gov (United States)

    Xiao, H.; Wang, D.; Hagen, S. C.; Medeiros, S. C.; Hall, C. R.

    2017-12-01

    Saltwater intrusion (SWI) that has been widely recognized as a detrimental issue causing the deterioration of coastal aquifer water quality and degradation of coastal ecosystems. While it is widely recognized that SWI is exacerbated worldwide due to global sea-level rise, we show that increased SWI from tropical cyclones under climate change is also a concern. In the Cape Canaveral Barrier Island Complex (CCBIC) located in east-central Florida, the salinity level of the surficial aquifer is of great importance to maintain a bio-diverse ecosystem and to support the survival of various vegetation species. Climate change induced SWI into the surficial aquifer can lead to reduction of freshwater storage and alteration of the distribution and productivity of vegetation communities. In this study, a three-dimensional variable-density SEAWAT model is developed and calibrated to investigate the spatial and temporal variation of salinity level in the surficial aquifer of CCBIC. We link the SEAWAT model to surge model data to examine the effects of storm surge from Hurricane Jeanne. Simulation results indicate that the surficial aquifer salinity level increases significantly right after the occurrence of storm surge because of high aquifer permeability and rapid infiltration and diffusion of the overtopping saltwater, while the surficial aquifer salinity level begins to decrease after the fresh groundwater recharge from the storm's rainfall. The tropical storm precipitation generates an effective hydraulic barrier further impeding SWI and providing seaward freshwater discharge for saltwater dilution and flushing. To counteract the catastrophic effects of storm surge, this natural remediation process may take at least 15-20 years or even several decades. These simulation results contribute to ongoing research focusing on forecasting regional vegetation community responses to climate change, and are expected to provide a useful reference for climate change adaptation planning

  8. The European Cystic Fibrosis Society Patient Registry: valuable lessons learned on how to sustain a disease registry.

    Science.gov (United States)

    Viviani, Laura; Zolin, Anna; Mehta, Anil; Olesen, Hanne Vebert

    2014-06-07

    Disease registries have the invaluable potential to provide an insight into the natural history of the disease under investigation, to provide useful information (e.g. through health indicators) for planning health care services and to identify suitable groups of patients for clinical trials enrolment. However, the establishment and maintenance of disease registries is a burdensome initiative from economical and organisational points of view and experience sharing on registries management is important to avoid waste of resources. The aim of this paper is to discuss the problems embedded in the institution and management of an international disease registry to warn against common mistakes that can derail the best of intentions: we share the experience of the European Cystic Fibrosis Society Patient Registry, which collects data on almost 30,000 patients from 23 countries. We discuss the major problems that researchers often encounter in the creation and management of disease registries: definition of the aims the registry has to reach, definition of the criteria for patients referral to the registry, definition of the information to record, set up of a data quality process, handling of missing data, maintenance of data confidentiality, regulation of data use and dissemination of research results. We give examples on how many crucial aspects were solved by the European Cystic Fibrosis Society Patient Registry regarding objectives, inclusion criteria and variables definition, data management, data quality controls, missing data handling, confidentiality maintenance, data use and results dissemination. We suggest an extensive literature research and discussions in working groups with different stake holders, including patient representatives, on the objectives, inclusion criteria and the information to record. We propose to pilot the recording of few variables and test the applicability of their definition first. The use of a shared electronic platform for data

  9. Glocal Clinical Registries: Pacemaker Registry Design and Implementation for Global and Local Integration – Methodology and Case Study

    Science.gov (United States)

    da Silva, Kátia Regina; Costa, Roberto; Crevelari, Elizabeth Sartori; Lacerda, Marianna Sobral; de Moraes Albertini, Caio Marcos; Filho, Martino Martinelli; Santana, José Eduardo; Vissoci, João Ricardo Nickenig; Pietrobon, Ricardo; Barros, Jacson V.

    2013-01-01

    Background The ability to apply standard and interoperable solutions for implementing and managing medical registries as well as aggregate, reproduce, and access data sets from legacy formats and platforms to advanced standard formats and operating systems are crucial for both clinical healthcare and biomedical research settings. Purpose Our study describes a reproducible, highly scalable, standard framework for a device registry implementation addressing both local data quality components and global linking problems. Methods and Results We developed a device registry framework involving the following steps: (1) Data standards definition and representation of the research workflow, (2) Development of electronic case report forms using REDCap (Research Electronic Data Capture), (3) Data collection according to the clinical research workflow and, (4) Data augmentation by enriching the registry database with local electronic health records, governmental database and linked open data collections, (5) Data quality control and (6) Data dissemination through the registry Web site. Our registry adopted all applicable standardized data elements proposed by American College Cardiology / American Heart Association Clinical Data Standards, as well as variables derived from cardiac devices randomized trials and Clinical Data Interchange Standards Consortium. Local interoperability was performed between REDCap and data derived from Electronic Health Record system. The original data set was also augmented by incorporating the reimbursed values paid by the Brazilian government during a hospitalization for pacemaker implantation. By linking our registry to the open data collection repository Linked Clinical Trials (LinkedCT) we found 130 clinical trials which are potentially correlated with our pacemaker registry. Conclusion This study demonstrates how standard and reproducible solutions can be applied in the implementation of medical registries to constitute a re-usable framework

  10. A genetic linkage map for the saltwater crocodile (Crocodylus porosus

    Directory of Open Access Journals (Sweden)

    Lance Stacey L

    2009-07-01

    Full Text Available Abstract Background Genome elucidation is now in high gear for many organisms, and whilst genetic maps have been developed for a broad array of species, surprisingly, no such maps exist for a crocodilian, or indeed any other non-avian member of the Class Reptilia. Genetic linkage maps are essential tools for the mapping and dissection of complex quantitative trait loci (QTL, and in order to permit systematic genome scans for the identification of genes affecting economically important traits in farmed crocodilians, a comprehensive genetic linage map will be necessary. Results A first-generation genetic linkage map for the saltwater crocodile (Crocodylus porosus was constructed using 203 microsatellite markers amplified across a two-generation pedigree comprising ten full-sib families from a commercial population at Darwin Crocodile Farm, Northern Territory, Australia. Linkage analyses identified fourteen linkage groups comprising a total of 180 loci, with 23 loci remaining unlinked. Markers were ordered within linkage groups employing a heuristic approach using CRIMAP v3.0 software. The estimated female and male recombination map lengths were 1824.1 and 319.0 centimorgans (cM respectively, revealing an uncommonly large disparity in recombination map lengths between sexes (ratio of 5.7:1. Conclusion We have generated the first genetic linkage map for a crocodilian, or indeed any other non-avian reptile. The uncommonly large disparity in recombination map lengths confirms previous preliminary evidence of major differences in sex-specific recombination rates in a species that exhibits temperature-dependent sex determination (TSD. However, at this point the reason for this disparity in saltwater crocodiles remains unclear. This map will be a valuable resource for crocodilian researchers, facilitating the systematic genome scans necessary for identifying genes affecting complex traits of economic importance in the crocodile industry. In addition

  11. Modification of saltwater stress response in Cyprinus carpio (Linnaeus, 1758) pre-exposed to pesticide indoxacarb.

    Science.gov (United States)

    Ghelichpour, Melika; Taheri Mirghaed, Ali; Mirzargar, Seyed Saeed; Joshaghani, Hamidreza; Ebrahimzadeh Mousavi, Hoseinali

    2018-01-01

    To evaluate the effects of indoxacarb on saltwater stress response in Cyprinus carpio, the fish were pre-exposed to indoxacarb (0, 0.75, 1.5 and 3mg/L denoted as CP, 0.75IT, 1.5IT and 3IT, respectively) for 21 days and then released to saltwater. A negative control (CN) group was included (the fish were held in indoxacarb-free water for the entire experiment). The fish were sampled immediately (0h) and 24, 48 and 72h after the salinity exposure for the analysis of plasma cortisol, glucose and sodium, chloride, potassium and calcium levels. All fish pre-exposed to 3mg/L indoxacarb, died after the first day of salinity challenge. CP showed typical cortisol response after the salinity challenge, but, cortisol response of the fish pre-exposed to indoxacarb (0.75IT and 1.5IT) was blocked. Plasma glucose increased significantly in all groups compared to the CN; however, this elevation had no consistent trend in 0.75IT and 1.5IT which indicated interference in glucose response due to indoxacarb exposure. Plasma sodium increased (compared to CN) in all groups after the salinity challenge. However, elevation in plasma chloride and potassium was significantly different among the groups and the indoxacarb-treated fish showed slightly sooner ionic disturbance. The results clearly indicate that indoxacarb impairs stress response of C. carpio and the fish may not be able to respond normally to additional stressors, which threatens their survival. Copyright © 2017 Elsevier Inc. All rights reserved.

  12. Application of the top specified boundary layer (TSBL) approximation to initial characterization of an inland aquifer mineralization 1. Direct contact between fresh and saltwater

    Science.gov (United States)

    Rubin, H.; Buddemeier, R.W.

    1998-01-01

    This paper presents a basic study in generalized terms that originates from two needs: (1) to understand the major mechanisms involved in the mineralization of groundwater of the Great Bend Prairie aquifer of Kansas by saltwater originating from a deeper Permian bedrock formation, and (2) to develop simple, robust tools that can readily be used for local assessment and management activities in the salt-affected region. A simplified basic conceptual model is adopted, incorporating two horizontal layers of porous medium which come into contact at a specific location within the model domain. The top layer is saturated with freshwater, and the bottom layer is saturated with saltwater. The paper considers various stages of approximation which can be useful for simplified simulation of the build-up of the transition zone (TZ) between the freshwater and the saltwater. The hierarchy of approximate approaches leads to the development of the top specified boundary layer (TSBL) method, which is the major tool used in this study for initial characterization of the development of the TZ. It is shown that the thickness of the TZ is mainly determined by the characteristic dispersivity. The build-up of the TZ is completed after a time period equal to the time needed to advect a fluid particle along the whole extent of the TZ. Potential applications and the effects of natural recharge and pumpage on salinity transport in the domain are discussed and evaluated in the context of demonstrating the practicality of the TSBL approach.

  13. Geochemical and sedimentological signature of catastrophic saltwater inundations (tsunami), New Zealand

    International Nuclear Information System (INIS)

    Chague-Goff, C.; Goff, J.R.

    1999-01-01

    Three tidal marshes in Able Tasman National Par, New Zealand, were studied using geochemical, sedimentological and radiometric dating techniques. Charcoal and plant material samples were taken from one core in each inlet for 14 C analysis. radiocarbon ages were converted to dendrocalibrated years . All samples produced a terrestrial 13 C signal. Near surface samples were date d by measuring 137 Cs. A 1700 year record of catastrophic saltwater inundations (CSI) events (Tsunami) was produced. Up to four such events were identified, with ruptures of one or more of the Wellington, Wairarapa and Alpine Faults being the most likely tsunamigenic source. CSI signatures include: peaks in Fe and/or S, a peak in fines and contemporaneous or delayed peaks in organic content and/or loss on ignition (LOI). Geochemical data in association with grain size analyses proved to be a valuable tool in the interpretation of these events

  14. Application and evaluation of electromagnetic methods for imaging saltwater intrusion in coastal aquifers: Seaside Groundwater Basin, California

    Science.gov (United States)

    Nenna, Vanessa; Herckenrather, Daan; Knight, Rosemary; Odlum, Nick; McPhee, Darcy

    2013-01-01

    Developing effective resource management strategies to limit or prevent saltwater intrusion as a result of increasing demands on coastal groundwater resources requires reliable information about the geologic structure and hydrologic state of an aquifer system. A common strategy for acquiring such information is to drill sentinel wells near the coast to monitor changes in water salinity with time. However, installation and operation of sentinel wells is costly and provides limited spatial coverage. We studied the use of noninvasive electromagnetic (EM) geophysical methods as an alternative to installation of monitoring wells for characterizing coastal aquifers. We tested the feasibility of using EM methods at a field site in northern California to identify the potential for and/or presence of hydraulic communication between an unconfined saline aquifer and a confined freshwater aquifer. One-dimensional soundings were acquired using the time-domain electromagnetic (TDEM) and audiomagnetotelluric (AMT) methods. We compared inverted resistivity models of TDEM and AMT data obtained from several inversion algorithms. We found that multiple interpretations of inverted models can be supported by the same data set, but that there were consistencies between all data sets and inversion algorithms. Results from all collected data sets suggested that EM methods are capable of reliably identifying a saltwater-saturated zone in the unconfined aquifer. Geophysical data indicated that the impermeable clay between aquifers may be more continuous than is supported by current models.

  15. Characteristics of Phytoplankton Biomass, Primary Production and Community Structure in the Modaomen Channel, Pearl River Estuary, with Special Reference to the Influence of Saltwater Intrusion during Neap and Spring Tides.

    Science.gov (United States)

    Zhou, Weihua; Gao, Jie; Liao, Jianzu; Shi, Ronggui; Li, Tao; Guo, Yajuan; Long, Aimin

    2016-01-01

    In recent decades, increasing frequency and intensity of saltwater intrusion in the Modaomen Channel has threatened the freshwater supply in the surrounding cities of the Pearl River Estuary, and ulteriorly changed the environmental conditions of the estuarine waters. Phytoplankton biomass, primary production (PP) and species composition, as well as hydrological and chemical parameters were examined along a downstream transect in the Modaomen Channel during neap tide (NT) and spring tide (ST), when a strong saltwater intrusion event occurred in late September, 2011. A total of 46 species phytoplankton were identified, including Bacillariophyta (25 species), Dinoflagellate (14 species), Chlorophyta (4 species), Cyanophyta (2 species) and Euglenozoa (1 species). The dominant species were shifted from freshwater diatoms (e.g., Melosira granulata and Melosira granulata var. angustissima) in the upper reaches to saline water diatoms (e.g., Skeletonema costatum and Coscinodiscus sp.) in the river mouth. Generally, phytoplankton density, biomass (chl-a) and PP decreased from the upper to lower reaches along the channel, and were significantly higher in NT than those of ST. There was a shift from large-sized phytoplankton (>20 μm) in the upper reaches to relative small-sized cells (5-20 μm) in the lower reaches. Compared to NT, low discharge and flow velocity, coupled with strong easterly winds during ST specially aggravated saltwater intrusion further to the upstream (~50 km from the estuary). The intruded saltwater diluted nutrients, N/P ratios, chl-a, and phytoplankton abundances, and thereby led to a decline in PP during ST.

  16. Utility of registries for post-marketing evaluation of medicines. A survey of Swedish health care quality registries from a regulatory perspective.

    Science.gov (United States)

    Feltelius, Nils; Gedeborg, Rolf; Holm, Lennart; Zethelius, Björn

    2017-06-01

    The aim of this study was to describe content and procedures in some selected Swedish health care quality registries (QRs) of relevance to regulatory decision-making. A workshop was organized with participation of seven Swedish QRs which subsequently answered a questionnaire regarding registry content on drug treatments and outcomes. Patient populations, coverage, data handling and quality control, as well as legal and ethical aspects are presented. Scientific publications from the QRs are used as a complementary measure of quality and scientific relevance. The registries under study collect clinical data of high relevance to regulatory and health technology agencies. Five out of seven registries provide information on the drug of interest. When applying external quality criteria, we found a high degree of fulfillment, although information on medication was not sufficient to answer all questions of regulatory interest. A notable strength is the option for linkage to the Prescribed Drug Registry and to information on education and socioeconomic status. Data on drugs used during hospitalization were also collected to some extent. Outcome measures collected resemble those used in relevant clinical trials. All registries collected patient-reported outcome measures. The number of publications from the registries was substantial, with studies of appropriate design, including randomized registry trials. Quality registries may provide a valuable source of post-marketing data on drug effectiveness, safety, and cost-effectiveness. Closer collaboration between registries and regulators to improve quality and usefulness of registry data could benefit both regulatory utility and value for health care providers.

  17. Clinical disease registries in acute myocardial infarction.

    Science.gov (United States)

    Ashrafi, Reza; Hussain, Hussain; Brisk, Robert; Boardman, Leanne; Weston, Clive

    2014-06-26

    Disease registries, containing systematic records of cases, have for nearly 100 years been valuable in exploring and understanding various aspects of cardiology. This is particularly true for myocardial infarction, where such registries have provided both epidemiological and clinical information that was not readily available from randomised controlled trials in highly-selected populations. Registries, whether mandated or voluntary, prospective or retrospective in their analysis, have at their core a common study population and common data definitions. In this review we highlight how registries have diversified to offer information on epidemiology, risk modelling, quality assurance/improvement and original research-through data mining, transnational comparisons and the facilitation of enrolment in, and follow-up during registry-based randomised clinical trials.

  18. Danish Hip Arthroscopy Registry (DHAR)

    DEFF Research Database (Denmark)

    Lund, Bent; Mygind-Klavsen, Bjarne; Grønbech Nielsen, Torsten

    2017-01-01

    The Danish Hip Arthroscopy Registry (DHAR) was initiated in January 2012 as a web-based prospective registry. The purpose of this study was to evaluate and report the first registry based outcome data of a national population with radiological and clinical femoroacetabular impingement (FAI......) data from DHAR between January 2012 and November 2015 were extracted. Radiological pincer-type FAI was defined as LCE > 35° and cam FAI as alpha-angle > 55°. These data were combined with FAI surgical data such as osteochondroplasty and labral repair or resection. PROMs consisting of HAGOS, EQ-5 D...

  19. The New Man and the Sea: Climate Change Perceptions and Sustainable Seafood Preferences of Florida Reef Anglers

    Directory of Open Access Journals (Sweden)

    James W. Harper

    2015-05-01

    Full Text Available Florida Reef stakeholders have downplayed the role of anthropogenic climate change while recognizing the reef system’s degradation. With an emphasis on recreational anglers, a survey using contingent valuation methods investigated stakeholders’ attitudes about the Florida Reef, climate change, and willingness to pay for sustainable and local seafood. Angst expressed about acidification and other climate change effects represents a recent shift of opinion. Supermajorities were willing to pay premiums for sustainably harvested and especially local seafood. Regression analysis revealed trust in seafood labels, travel to coral reefs, political orientation, place of birth, and motorboat use as strong, direct predictors of shopping behavior, age and environmental concerns as moderately influential, and income and education as surprisingly poor predictors. Distrust of authority may motivate some stakeholders, but new attitudes about climate change and the high desirability of local seafood offer potential for renewed regional engagement and market-based incentives for sustainability.

  20. Environmental Agents Service (EAS) Registry System of Records

    Data.gov (United States)

    Department of Veterans Affairs — The Environmental Agent Service (EAS) Registries is the information system encompassing the Ionizing Radiation Registry (IRR), the Agent Orange Registry (AOR), and...

  1. International Consortium of Vascular Registries Consensus Recommendations for Peripheral Revascularisation Registry Data Collection

    DEFF Research Database (Denmark)

    Behrendt, Christian-Alexander; Bertges, Daniel; Eldrup, Nikolaj

    2018-01-01

    intervention; (ix) complications; and (x) follow up. CONCLUSION: A modified Delphi study allowed 25 international vascular registry experts to achieve a consensus recommendation for a minimum core data set and an optimum data set for peripheral arterial revascularisation registries. Continued global...... via internet exchange and face to face discussions. In total, 187 different items from the various registry data forms were identified for potential inclusion in the recommended data set. Ultimately, 79 items were recommended for inclusion in minimum core data sets, including 65 items in the level 1...... data set, and an additional 14 items in the more specific level 2 and 3 recommended data sets. Data elements were broadly divided into (i) patient characteristics; (ii) comorbidities; (iii) current medications; (iv) lesion treated; (v) procedure; (vi) bypass; (vii) endarterectomy (viii) catheter based...

  2. 14 CFR 47.19 - FAA Aircraft Registry.

    Science.gov (United States)

    2010-01-01

    ... 14 Aeronautics and Space 1 2010-01-01 2010-01-01 false FAA Aircraft Registry. 47.19 Section 47.19... REGISTRATION General § 47.19 FAA Aircraft Registry. Each application, request, notification, or other communication sent to the FAA under this Part must be mailed to the FAA Aircraft Registry, Department of...

  3. 14 CFR 49.11 - FAA Aircraft Registry.

    Science.gov (United States)

    2010-01-01

    ... 14 Aeronautics and Space 1 2010-01-01 2010-01-01 false FAA Aircraft Registry. 49.11 Section 49.11... AIRCRAFT TITLES AND SECURITY DOCUMENTS General § 49.11 FAA Aircraft Registry. To be eligible for recording, a conveyance must be mailed to the FAA Aircraft Registry, Department of Transportation, Post Office...

  4. Diel use of a saltwater creek by white-tip reef sharks Triaenodon obesus (Carcharhiniformes: Carcharhinidae) in Academy Bay, Galapagos Islands.

    Science.gov (United States)

    Peñiaherrera, César; Hearn, Alex R; Kuhn, Angela

    2012-06-01

    White-tip reef sharks are common inhabitants of the shallow waters surrounding the Galapagos Islands, where several known aggregation sites have become touristic attractions. With the aim to describe site fidelity and residency patterns of the white-tip reef sharks in a saltwater creek, we used the ultrasonic telemetry method. The study was undertaken in a saltwater channel South of Academy Bay, Santa Cruz Island, from May 2008-September 2009. A total of nine transmitters were attached to sharks and ultrasonic receivers were deployed at the inner and outside areas of the creek. From the total of fitted sharks, four lost their transmitters. The results obtained with the remaining sharks showed an elevated use of the inner area of the channel during the day, with more use of the external area during the night. However, none of the sharks were detected at the site every day, suggesting that they may have a number of preferred sites within their home range. More studies are needed to detail the home range and habitat use of this species, and to guide its protection level in the Academy Bay area.

  5. Artificial Nutritional Support Registries: systematic review.

    Science.gov (United States)

    Castelló-Botía, I; Wanden-Berghe, C; Sanz-Valero, J

    2009-01-01

    The nutritional registries are data bases through which we obtain the information to understand the nutrition of populations. Several main nutrition societies of the world have these types of registries, outstanding the NADYA (Home artificial and Ambulatory nutrition) group in Spain. The object of this study is to determine by means of a systematic review, the existent scientific production in the international data bases referred to nutritional support registries. Descriptive transversal study of the results of a critical bibliographic research done in the bioscience data bases: MEDLINE, EMBASE, The Cochrane Library, ISI (Web of Sciences), LILACS, CINHAL. A total of 20 original articles related to nutritional registries were found and recovered. Eleven registries of eight countries were identified: Australia, Germany, Italy, Japan, Spain, Sweden, United Status and United Kingdom. The Price Index was of 65% and all the articles were published in the last 20 years. The Price Index highlights the innovativeness of this practice. The articles related to nutritional support are heterogeneous with respect to data and population, which exposes this as a limitation for a combined analysis.

  6. The National Mental Health Registry (NMHR).

    Science.gov (United States)

    Aziz, A A; Salina, A A; Abdul Kadir, A B; Badiah, Y; Cheah, Y C; Nor Hayati, A; Ruzanna, Z Z; Sharifah Suziah, S M; Chee, K Y

    2008-09-01

    The National Mental Health Registry (NMHR) collects information about patients with mental disorder in Malaysia. This information allows us to estimate the incidence of selected mental disorders, and to evaluate risk factors and treatment in the country. The National Mental Health Registry (NMHR) presented its first report in 2004, a year after its establishment. The report focused on schizophrenia as a pioneer project for the National Mental Health Registry. The development of the registry has progressed with data collected from government-based facilities, the academia and the private sector. The 2003-2005 report was recently published and distributed. Since then the registry has progressed to include suicides and other mental illnesses such as depression. The NMHR Report 2003-2005 provides detailed information about the profile of persons with Schizophrenia who presented for the first time to various psychiatry and mental health providers throughout Malaysia. More detailed description regarding pharmacotherapy is reported and few cross tabulations done in an effort to provide better understanding and more clinically meaningful reports.

  7. Occupational Disease Registries-Characteristics and Experiences.

    Science.gov (United States)

    Davoodi, Somayeh; Haghighi, Khosro Sadeghniat; Kalhori, Sharareh Rostam Niakan; Hosseini, Narges Shams; Mohammadzadeh, Zeinab; Safdari, Reza

    2017-06-01

    Due to growth of occupational diseases and also increase of public awareness about their consequences, attention to various aspects of diseases and improve occupational health and safety has found great importance. Therefore, there is the need for appropriate information management tools such as registries in order to recognitions of diseases patterns and then making decision about prevention, early detection and treatment of them. These registries have different characteristics in various countries according to their occupational health priorities. Aim of this study is evaluate dimensions of occupational diseases registries including objectives, data sources, responsible institutions, minimum data set, classification systems and process of registration in different countries. In this study, the papers were searched using the MEDLINE (PubMed) Google scholar, Scopus, ProQuest and Google. The search was done based on keyword in English for all motor engines including "occupational disease", "work related disease", "surveillance", "reporting", "registration system" and "registry" combined with name of the countries including all subheadings. After categorizing search findings in tables, results were compared with each other. Important aspects of the registries studied in ten countries including Finland, France, United Kingdom, Australia, Czech Republic, Malaysia, United States, Singapore, Russia and Turkey. The results show that surveyed countries have statistical, treatment and prevention objectives. Data sources in almost the rest of registries were physicians and employers. The minimum data sets in most of them consist of information about patient, disease, occupation and employer. Some of countries have special occupational related classification systems for themselves and some of them apply international classification systems such as ICD-10. Finally, the process of registration system was different in countries. Because occupational diseases are often

  8. Assessing Ontario's Personal Support Worker Registry

    Directory of Open Access Journals (Sweden)

    Audrey Laporte

    2013-08-01

    Full Text Available In response to the growing role of personal support workers (PSWs in the delivery of health care services to Ontarians, the Ontario government has moved forward with the creation of a PSW registry. This registry will be mandatory for all PSWs employed by publicly funded health care employers, and has the stated objectives of better highlighting the work that PSWs do in Ontario, providing a platform for PSWs and employers to more easily access the labour market, and to provide government with information for human resources planning. In this paper we consider the factors that brought the creation of a PSW registry onto the Ontario government’s policy agenda, discuss how the registry is being implemented, and provide an analysis of the strengths and weaknesses of this policy change.

  9. The Pediatric Emergency Care Applied Research Network Registry: A Multicenter Electronic Health Record Registry of Pediatric Emergency Care.

    Science.gov (United States)

    Deakyne Davies, Sara J; Grundmeier, Robert W; Campos, Diego A; Hayes, Katie L; Bell, Jamie; Alessandrini, Evaline A; Bajaj, Lalit; Chamberlain, James M; Gorelick, Marc H; Enriquez, Rene; Casper, T Charles; Scheid, Beth; Kittick, Marlena; Dean, J Michael; Alpern, Elizabeth R

    2018-04-01

     Electronic health record (EHR)-based registries allow for robust data to be derived directly from the patient clinical record and can provide important information about processes of care delivery and patient health outcomes.  A data dictionary, and subsequent data model, were developed describing EHR data sources to include all processes of care within the emergency department (ED). ED visit data were deidentified and XML files were created and submitted to a central data coordinating center for inclusion in the registry. Automated data quality control occurred prior to submission through an application created for this project. Data quality reports were created for manual data quality review.  The Pediatric Emergency Care Applied Research Network (PECARN) Registry, representing four hospital systems and seven EDs, demonstrates that ED data from disparate health systems and EHR vendors can be harmonized for use in a single registry with a common data model. The current PECARN Registry represents data from 2,019,461 pediatric ED visits, 894,503 distinct patients, more than 12.5 million narrative reports, and 12,469,754 laboratory tests and continues to accrue data monthly.  The Registry is a robust harmonized clinical registry that includes data from diverse patients, sites, and EHR vendors derived via data extraction, deidentification, and secure submission to a central data coordinating center. The data provided may be used for benchmarking, clinical quality improvement, and comparative effectiveness research. Schattauer.

  10. Registries Help Moms Measure Medication Risks

    Science.gov (United States)

    ... in the case of the North American Antiepileptic Drug Pregnancy Registry, which studies the effects of drugs for ... is taking. For example, the North American Antiepileptic Drug Pregnancy Registry website lists more than 30 medications being ...

  11. Saltwater contamination in the managed low-lying farmland of the Venice coast, Italy: An assessment of vulnerability.

    Science.gov (United States)

    Da Lio, Cristina; Carol, Eleonora; Kruse, Eduardo; Teatini, Pietro; Tosi, Luigi

    2015-11-15

    The original morphology and hydrogeology of many low-lying coastlands worldwide have been significantly modified over the last century through river diversion, embankment built-up, and large-scale land reclamation projects. This led to a progressive shifting of the groundwater-surficial water exchanges from naturally to anthropogenically driven. In this human-influenced hydrologic landscape, the saltwater contamination usually jeopardizes the soil productivity. In the coastland south of Venice (Italy), several well log measurements, chemical and isotope analyses have been performed over the last decade to characterize the occurrence of the salt contamination. The processing of this huge dataset highlights a permanent variously-shaped saline contamination up to 20km inland, with different conditions in relation with the various geomorphological features of the area. The results point out the important role of the land reclamation in shaping the present-day salt contamination and reveal the contribution of precipitation, river discharge, lagoon and sea water to the shallow groundwater in the various coastal sectors. Moreover, an original vulnerability map to salt contamination in relation to the farmland productivity has been developed taking into account the electrical conductivity of the upper aquifer in the worst condition, the ground elevation, and the distance from salt and fresh surface water sources. Finally, the study allows highlighting the limit of traditional investigations in monitoring saltwater contamination at the regional scale in managed Holocene coastal environments. Possible improvements are outlined. Copyright © 2015 Elsevier B.V. All rights reserved.

  12. ISHKS joint registry: A preliminary report.

    Science.gov (United States)

    Pachore, Jawahir A; Vaidya, Shrinand V; Thakkar, Chandrasekhar J; Bhalodia, Haresh Kumar P; Wakankar, Hemant M

    2013-09-01

    Total knee arthroplasty (TKA) and total hip arthroplasty (THA) are the most widely practiced surgical options for arthritis all over the world and its application is rising in India. Indian Society of Hip and Knee Surgeons (ISHKS) has established a joints registry and has been collecting data for last 6 years. All members of ISHKS are encouraged to actively participate in the registry. A simple two page knee and hip form can be downloaded from the website www.ishks.com. The information collected includes patient demographics, indication for surgery, implant details and in case of revision arthroplasty: the details of implants removed and the cause of failure of primary arthroplasty. These forms are mailed to the central registry office and the data is fed in computerized registry. Data collection started in October 2006. Joint registry is a very important initiative of ISHKS and till date, have data of 34,478 TKAs and 3604 THAs, contributed by 42 surgeons across India. Some important observations have emerged. Data of 34,478 TKAs was assessed: These included 8612 males (25%) and 25,866 females (75%). Average age was 64.4 years (Osteoarthritis range: 45 to 88 years; Rheumatoid arthritis range: 22 to 74 years). Average body mass index was 29.1 (Range: 18.1 to 42.9). The indication for TKA was osteoarthritis in 33,444 (97%) and rheumatoid arthritis in 759 (2.2%). Total of 3604 THA procedures were recorded. These included 2162 (60%) male patients and 1442 (40%) female patients. Average age was 52 years (Range 17 to 85 years) and average BMI was 25.8 (Range: 17.3 to 38.5). The indications for THA was AVN in 49%. The registry will become more meaningful in years to come. Active participation of all arthroplasty surgeons across India is vital for the success of the joints registry.

  13. Definition, epidemiology and registries of pulmonary hypertension.

    Science.gov (United States)

    Awdish, R; Cajigas, H

    2016-05-01

    Pulmonary arterial hypertension (PAH) is a subcategory of pulmonary hypertension (PH) that comprises a group of disorders with similar pulmonary vascular pathology. Though PH is common, the estimated incidence of IPAH is 1-3 cases per million, making it a rare disease. The hemodynamic definition of PAH is a mean pulmonary artery pressure at rest >OR = 25 mm Hg in the presence of a pulmonary capillary wedge pressure registries. These registries have been indispensable in the characterization and mapping of the natural history of the disease. Equations and risk calculators derived from registries have given clinicians a basis for risk stratification and prognostication. The sequential accumulation of data since the registries began in the 1980s allows for comparisons to be made. Patients who are differentiated by treatment eras and environments can be contrasted. Variability among inclusion criteria similarly allows for comparisons of these subpopulations. This article provides an overview of available registries, highlights insights provided by each and discusses key issues around the interpretation and extrapolation of data from PAH registries. Registries have allowed us to appreciate the improvement in survival afforded by modern therapy and enhanced detection of this disease. Moving forward, a more global approach to registries is needed, as is enhanced collaboration and centralization.

  14. Towards a national trauma registry for the United Arab Emirates

    Directory of Open Access Journals (Sweden)

    Barka Ezedin

    2010-07-01

    Full Text Available Abstract Background Trauma is a major health problem in the United Arab Emirates (UAE as well as worldwide. Trauma registries provide large longitudinal databases for analysis and policy improvement. We aim in this paper to report on the development and evolution of a national trauma registry using a staged approach by developing a single-center registry, a two-center registry, and then a multi-center registry. The three registries were established by developing suitable data collection forms, databases, and interfaces to these databases. The first two registries collected data for a finite period of time and the third is underway. The steps taken to establish these registries depend on whether the registry is intended as a single-center or multi-center registry. Findings Several issues arose and were resolved during the development of these registries such as the relational design of the database, whether to use a standalone database management system or a web-based system, and the usability and security of the system. The inclusion of preventive medicine data elements is important in a trauma registry and the focus on road traffic collision data elements is essential in a country such as the UAE. The first two registries provided valuable data which has been analyzed and published. Conclusions The main factors leading to the successful establishment of a multi-center trauma registry are the development of a concise data entry form, development of a user-friendly secure web-based database system, the availability of a computer and Internet connection in each data collection center, funded data entry personnel well trained in extracting medical data from the medical record and entering it into the computer, and experienced personnel in trauma injuries and data analysis to continuously maintain and analyze the registry.

  15. Functional requirements regarding medical registries--preliminary results.

    Science.gov (United States)

    Oberbichler, Stefan; Hörbst, Alexander

    2013-01-01

    The term medical registry is used to reference tools and processes to support clinical or epidemiologic research or provide a data basis for decisions regarding health care policies. In spite of this wide range of applications the term registry and the functional requirements which a registry should support are not clearly defined. This work presents preliminary results of a literature review to discover functional requirements which form a registry. To extract these requirements a set of peer reviewed articles was collected. These set of articles was screened by using methods from qualitative research. Up to now most discovered functional requirements focus on data quality (e. g. prevent transcription error by conducting automatic domain checks).

  16. Imaging Saltwater Intrusion Along the Coast of Monterey Bay Using Long-Offset Electrical Resistivity Tomography

    Science.gov (United States)

    Goebel, M.; Knight, R. J.; Pidlisecky, A.

    2016-12-01

    Coastal regions represent a complex dynamic interface where saltwater intrusion moves seawater landward and groundwater discharge moves freshwater seaward. These processes can have a dramatic impact on water quality, affecting both humans and coastal ecosystems. The ability to map the subsurface distribution of fresh and salt water is a critical step in predicting and managing water quality in coastal regions. This is commonly accomplished using wells, which are expensive and provide point information, which may fail to capture the spatial complexity in subsurface conditions. We present an alternate method for acquiring data, long-offset Electrical Resistivity Tomography (ERT), which is non-invasive, cost effective, and can address the problem of poor spatial sampling. This geophysical method can produce continuous profiles of subsurface electrical resistivity to a depth of 300 m, with spatial resolution on the order of tens of meters. Our research focuses on the Monterey Bay region, where sustained groundwater extraction over the past century has led to significant saltwater intrusion. ERT was acquired along 40 kilometers of the coast using the roll along method, allowing for continuous overlap in data acquisition. Electrodes were spaced every 22.2 m, with a total of 81 electrodes along the 1.8 km active cable length. The data show a complex distribution of fresh and salt water, influenced by geology, groundwater pumping, recharge, and land-use. While the inverted ERT resistivity profiles correspond well with existing data sets and geologic interpretations in the region, the spatial complexity revealed through the ERT data goes beyond what is known from traditional data sources alone. This leads us to conclude that this form of data can be extremely useful in informing and calibrating groundwater flow models, making targeted management decisions, and monitoring changes in subsurface salinities over time.

  17. Diel use of a saltwater creek by white-tip reef sharks Triaenodon obesus (Carcharhiniformes: Carcharhinidae in Academy Bay, Galapagos Islands

    Directory of Open Access Journals (Sweden)

    César Peñaherrera

    2012-06-01

    Full Text Available White-tip reef sharks are common inhabitants of the shallow waters surrounding the Galapagos Islands, where several known aggregation sites have become touristic attractions. With the aim to describe site fidelity and residency patterns of the white-tip reef sharks in a saltwater creek, we used the ultrasonic telemetry method. The study was undertaken in a saltwater channel South of Academy Bay, Santa Cruz Island, from May 2008-September 2009. A total of nine transmitters were attached to sharks and ultrasonic receivers were deployed at the inner and outside areas of the creek. From the total of fitted sharks, four lost their transmitters. The results obtained with the remaining sharks showed an elevated use of the inner area of the channel during the day, with more use of the external area during the night. However, none of the sharks were detected at the site every day, suggesting that they may have a number of preferred sites within their home range. More studies are needed to detail the home range and habitat use of this species, and to guide its protection level in the AcademyBay area. Rev. Biol. Trop. 60 (2: 735-743. Epub 2012 June 01.

  18. The Danish Heart Registry

    DEFF Research Database (Denmark)

    Özcan, Cengiz; Juel, Knud; Lassen, Jens Flensted

    2016-01-01

    AIM: The Danish Heart Registry (DHR) seeks to monitor nationwide activity and quality of invasive diagnostic and treatment strategies in patients with ischemic heart disease as well as valvular heart disease and to provide data for research. STUDY POPULATION: All adult (≥15 years) patients...... undergoing coronary angiography (CAG), percutaneous coronary intervention (PCI), coronary artery bypass grafting, and heart valve surgery performed across all Danish hospitals were included. MAIN VARIABLES: The DHR contains a subset of the data stored in the Eastern and Western Denmark Heart Registries (EDHR...

  19. The role of registries in rare genetic lipid disorders: Review and introduction of the first global registry in lipoprotein lipase deficiency.

    Science.gov (United States)

    Steinhagen-Thiessen, Elisabeth; Stroes, Erik; Soran, Handrean; Johnson, Colin; Moulin, Philippe; Iotti, Giorgio; Zibellini, Marco; Ossenkoppele, Bas; Dippel, Michaela; Averna, Maurizio R

    2017-07-01

    A good understanding of the natural history of rare genetic lipid disorders is a pre-requisite for successful patient management. Disease registries have been helpful in this regard. Lipoprotein Lipase Deficiency (LPLD) is a rare, autosomal-recessive lipid disorder characterized by severe hypertriglyceridemia and a very high risk for recurrent acute pancreatitis, however, only limited data are available on its natural course. Alipogene tiparvovec (Glybera ® ) is the first gene therapy to receive Marketing Authorization in the European Union; GENIALL (GENetherapy In the MAnagement of Lipoprotein Lipase Deficiency), a 15-year registry focusing on LPLD was launched in 2014 as part of its Risk Management Plan. The aim of this publication is to introduce the GENIALL Registry within a structured literature review of registries in rare genetic lipid disorders. A total of 11 relevant initiatives/registries were identified (homozygous Familial Hypercholesterolemia (hoFH) [n = 5]; LPLD [n = 1]; Lysosomal Acid Lipase Deficiency [LALD, n = 1], detection of mutations in genetic lipid disorders [n = 4]). Besides one product registry in hoFH and the LALD registry, all other initiatives are local or country-specific. GENIALL is the first global prospective registry in LPLD that will collect physician and patient generated data on the natural course of LPLD, as well as long-term outcomes of gene therapy. There is a limited number of international initiatives focusing on the natural course of specific rare genetic lipid disorders. The GENIALL LPLD Registry could be the first step towards a future broader global initiative that collects data related to familial chylomicronemia syndrome and their underlying genetic causes. Copyright © 2016. Published by Elsevier B.V.

  20. Simulation of groundwater flow pathlines and freshwater/saltwater transition zone movement, Manhasset Neck, Nassau County, New York

    Science.gov (United States)

    Misut, Paul; Aphale, Omkar

    2014-01-01

    A density-dependent groundwater flow and solute transport model of Manhasset Neck, Long Island, New York, was used to analyze (1) the effects of seasonal stress on the position of the freshwater/saltwater transition zone and (2) groundwater flowpaths. The following were used in the simulation: 182 transient stress periods, representing the historical record from 1920 to 2011, and 44 transient stress periods, representing future hypothetical conditions from 2011 to 2030. Simulated water-level and salinity (chloride concentration) values are compared with values from a previously developed two-stress-period (1905–1944 and 1945–2005) model. The 182-stress-period model produced salinity (chloride concentration) values that more accurately matched the observed salinity (chloride concentration) values in response to hydrologic stress than did the two-stress-period model, and salinity ranged from zero to about 3 parts per thousand (equivalent to zero to 1,660 milligrams per liter chloride). The 182-stress-period model produced improved calibration statistics of water-level measurements made throughout the study area than did the two-stress-period model, reducing the Lloyd aquifer root mean square error from 7.0 to 5.2 feet. Decreasing horizontal and vertical hydraulic conductivities (fixed anisotropy ratio) of the Lloyd and North Shore aquifers by 20 percent resulted in nearly doubling the simulated salinity(chloride concentration) increase at Port Washington observation well N12508. Groundwater flowpath analysis was completed for 24 production wells to delineate water source areas. The freshwater/saltwater transition zone moved toward and(or) away from wells during future hypothetical scenarios.

  1. Bubble-size distributions produced by wall injection of air into flowing freshwater, saltwater and surfactant solutions

    Science.gov (United States)

    Winkel, Eric S.; Ceccio, Steven L.; Dowling, David R.; Perlin, Marc

    2004-12-01

    As air is injected into a flowing liquid, the resultant bubble characteristics depend on the properties of the injector, near-wall flow, and flowing liquid. Previous research has shown that near-wall bubbles can significantly reduce skin-friction drag. Air was injected into the turbulent boundary layer on a test section wall of a water tunnel containing various concentrations of salt and surfactant (Triton-X-100, Union Carbide). Photographic records show that the mean bubble diameter decreased monotonically with increasing salt and surfactant concentrations. Here, 33 ppt saltwater bubbles had one quarter, and 20 ppm Triton-X-100 bubbles had one half of the mean diameter of freshwater bubbles.

  2. Danish Hip Arthroscopy Registry (DHAR)

    DEFF Research Database (Denmark)

    Lund, Bent; Mygind-Klavsen, Bjarne; Grønbech Nielsen, Torsten

    2017-01-01

    The Danish Hip Arthroscopy Registry (DHAR) was initiated in January 2012 as a web-based prospective registry. The purpose of this study was to evaluate and report the first registry based outcome data of a national population with radiological and clinical femoroacetabular impingement (FAI......) undergoing hip arthroscopic treatment. Our primary hypothesis was that patients undergoing hip arthroscopy would improve significantly in pain, quality of life and sports related outcome measurements in Patient Related Outcome Measures (PROM). Peri-operative data and Patient Reported Outcome Measures (PROM......-5 D demonstrated improvement after 1 and 2 years from 0.66 pre-op to 0.78 at 2 years. HSAS improved significantly from 2.5 to 3.3. Pain score data demonstrated improvement in NRS-rest 39 to 17 and NRS Walk 49 to 22 at follow-up. We conclude that patients with FAI undergoing hip arthroscopy...

  3. A description and comparison of selected forest carbon registries: a guide for States considering the development of a forest carbon registry

    Science.gov (United States)

    Jessica Call; Jennifer Hayes

    2007-01-01

    There is increasing interest in tools for measuring and reducing emissions of carbon dioxide, a major greenhouse gas. Two tools that have been receiving a lot of attention include carbon markets and carbon registries. Carbon registries are established to record and track net carbon emission levels over time. These registries provide quantifiable and verifiable carbon...

  4. Agency for Toxic Substances and Disease Registry

    Science.gov (United States)

    ... Z # Search Form Controls Search The CDC submit Agency for Toxic Substances and Disease Registry Note: Javascript ... gov . Recommend on Facebook Tweet Share Compartir The Agency for Toxic Substances and Disease Registry (ATSDR) , based ...

  5. Dementia registries around the globe and their applications: A systematic review.

    Science.gov (United States)

    Krysinska, Karolina; Sachdev, Perminder S; Breitner, John; Kivipelto, Miia; Kukull, Walter; Brodaty, Henry

    2017-09-01

    Patient registries are valuable tools helping to address significant challenges in research, care, and policy. Registries, well embedded in many fields of medicine and public health, are relatively new in dementia. This systematic review presents the current situation in regards to dementia registries worldwide. We identified 31 dementia registries operating on an international, national, or local level between 1986 and 2016. More than half of the registries aimed to conduct or facilitate research, including preclinical research registries and registries recruiting research volunteers. Other dementia registries collected epidemiological or quality of care data. We present evidence of practical and economic outcomes of registries for research, clinical practice and policy, and recommendations for future development. Global harmonization of recruitment methods and minimum data would facilitate international comparisons. Registries provide a positive return on investment; their establishment and maintenance require ongoing support by government, policy makers, research funding bodies, clinicians, and individuals with dementia and their caregivers. Copyright © 2017 the Alzheimer's Association. All rights reserved.

  6. The Western Denmark Cardiac Computed Tomography Registry

    DEFF Research Database (Denmark)

    Nielsen, Lene Hüche; Nørgaard, Bjarne Linde; Tilsted, Hans-Henrik

    2014-01-01

    BACKGROUND: As a subregistry to the Western Denmark Heart Registry (WDHR), the Western Denmark Cardiac Computed Tomography Registry (WDHR-CCTR) is a clinical database established in 2008 to monitor and improve the quality of cardiac computed tomography (CT) in Western Denmark. OBJECTIVE: We...... examined the content, data quality, and research potential of the WDHR-CCTR. METHODS: We retrieved 2008-2012 data to examine the 1) content; 2) completeness of procedure registration using the Danish National Patient Registry as reference; 3) completeness of variable registration comparing observed vs...

  7. Effects of climate variability on saltwater intrusions in coastal aquifers in Southern Denmark

    Science.gov (United States)

    Meyer, Rena; Sonnenborg, Torben; Engesgaard, Peter; Høyer, Anne-Sophie; Jørgensen, Flemming; Hisnby, Klaus; Hansen, Birgitte; Jensen, Jørn Bo; Piotrowski, Jan A.

    2016-04-01

    As in many other regions of the world fresh water supply in Denmark is based on groundwater resources. Aquifers in the low-lying areas in the south-west of Jutland are particularly vulnerable to saltwater intrusions which are likely to intensify due to relative sea level rise. To understand the dynamics and development of this complex flow system, the initial hydrodynamic conditions imposed by the last Scandinavian Ice Sheet (SIS) must be taken into account. The whole region has undergone changes in climatic and hydraulic conditions within the last 15000 years that may show influence on the present flow conditions. It is likely that the groundwater-flow dynamics, driven by the postglacial hydraulic head drop and the relative sea level rise are not yet equilibrated. Enhanced by the potential future sea level rise due to climate change, contamination of fresh-water aquifers will continue. The 2800-km2 - large coast-to-coast study area located in the southern part of Jutland was partly overridden by the Weichselian ice sheet. Geophysical and geological mapping shows salt water intrusions up to 20 km inland from the present coast. Based on a geological voxel model spanning Miocene through Quaternary deposits a large-scale 3D numerical groundwater flow and salt water transport model has been developed. It includes density-driven flow and simulates the distribution of the current saltwater intrusions and their evolution during the last 15000 years. Particle tracking and direct age simulations are performed to identify recharge areas and constrain groundwater ages. The simulated ages are compared to ages derived from isotope analysis of groundwater samples both from Miocene and Quaternary aquifers. The origin of the groundwater is determined based on isotopic and chemical composition. Additionally, heavy noble gas analysis is carried out to estimate recharge temperatures and mechanisms at locations where groundwater recharge during the last glaciation is indicated. This

  8. Correlating Orphaned Windows Registry Data Structures

    Directory of Open Access Journals (Sweden)

    Damir Kahved

    2009-06-01

    Full Text Available Recently, it has been shown that deleted entries of the Microsoft Windows registry (keys may still reside in the system files once the entries have been deleted from the active database. Investigating the complete keys in context may be extremely important from both a Forensic Investigation point of view and a legal point of view where a lack of context can bring doubt to an argument. In this paper we formalise the registry behaviour and show how a retrieved value may not maintain a relation to the part of the registry it belonged to and hence lose that context. We define registry orphans and elaborate on how they can be created inadvertently during software uninstallation and other system processes. We analyse the orphans and attempt to reconstruct them automatically. We adopt a data mining approach and introduce a set of attributes that can be applied by the forensic investigator to match values to their parents. The heuristics are encoded in a Decision Tree that can discriminate between keys and select those which most likely owned a particular orphan value.

  9. Assessing the feasibility of a web-based registry for multiple orphan lung diseases: the Australasian Registry Network for Orphan Lung Disease (ARNOLD) experience

    OpenAIRE

    Casamento, K.; Laverty, A.; Wilsher, M.; Twiss, J.; Gabbay, E.; Glaspole, I.; Jaffe, A.

    2016-01-01

    Background We investigated the feasibility of using an online registry to provide prevalence data for multiple orphan lung diseases in Australia and New Zealand. Methods A web-based registry, The Australasian Registry Network of Orphan Lung Diseases (ARNOLD) was developed based on the existing British Paediatric Orphan Lung Disease Registry. All adult and paediatric respiratory physicians who were members of the Thoracic Society of Australia and New Zealand in Australia and New Zealand were s...

  10. United States Transuranium and Uranium Registries

    International Nuclear Information System (INIS)

    Kathren, R.L.; Filipy, R.E.; Dietert, S.E.

    1991-06-01

    This report summarizes the primary scientific activities of the United States Transuranium and Uranium Registries for the period October 1, 1989 through September 30, 1990. The Registries are parallel human tissue research programs devoted to the study of the actinide elements in humans. To date there have been 261 autopsy or surgical specimen donations, which include 11 whole bodies. The emphasis of the Registry was directed towards quality improvement and the development of a fully computerized data base that would incorporate not only the results of postmortem radiochemical analysis, but also medical and monitoring information obtained during life. Human subjects reviews were also completed. A three compartment biokinetic model for plutonium distribution is proposed. 2 tabs

  11. Designing exposure registries for improved tracking of occupational exposure and disease.

    Science.gov (United States)

    Arrandale, Victoria H; Bornstein, Stephen; King, Andrew; Takaro, Timothy K; Demers, Paul A

    2016-06-27

    Registries are one strategy for collecting information on occupational exposure and disease in populations. Recently leaders in the Canadian occupational health and safety community have shown an interest in the use of occupational exposure registries. The primary goal of this study was to review a series of Canadian exposure registries to identify their strengths and weaknesses as a tool for tracking occupational exposure and disease in Canada. A secondary goal was to identify the features of an exposure registry needed to specifically contribute to prevention, including the identification of new exposure-disease relationships. A documentary review of five exposure registries from Canada was completed. Strengths and limitations of the registries were compared and key considerations for designing new registries were identified. The goals and structure of the exposure registries varied considerably. Most of the reviewed registries had voluntary registration, which presents challenges for the use of the data for either surveillance or epidemiology. It is recommended that eight key issues be addressed when planning new registries: clear registry goal(s), a definition of exposure, data to be collected (and how it will be used), whether enrolment will be mandatory, as well as ethical, privacy and logistical considerations. When well constructed, an exposure registry can be a valuable tool for surveillance, epidemiology and ultimately the prevention of occupational disease. However, exposure registries also have a number of actual and potential limitations that need to be considered.

  12. The Henry-Saltwater Intrusion Benchmark – Alternatives in Multiphysics Formulations and Solution Strategies

    Directory of Open Access Journals (Sweden)

    E Holzbecher

    2016-03-01

    Full Text Available In a classical paper Henry set up a conceptual model for simulating saltwater intrusion into coastal aquifers. Up to now the problem has been taken up by software developers and modellers as a benchmark for codes simulating coupled flow and transport in porous media. The Henry test case has been treated using different numerical methods based on various formulations of differential equations. We compare several of these approaches using multiphysics software. We model the problem using Finite Elements, utilizing the primitive variables and the streamfunction approach, both with and without using the Oberbeck-Boussinesq assumption. We compare directly coupled solvers with segregated solver strategies. Changing finite element orders and mesh refinement, we find that models based on the streamfunction converge 2-4 times faster than runs based on primitive variables. Concerning the solution strategy, we find an advantage of Picard iterations compared to monolithic Newton iterations.

  13. Registry Assessment of Peripheral Interventional Devices (RAPID): Registry assessment of peripheral interventional devices core data elements.

    Science.gov (United States)

    Jones, W Schuyler; Krucoff, Mitchell W; Morales, Pablo; Wilgus, Rebecca W; Heath, Anne H; Williams, Mary F; Tcheng, James E; Marinac-Dabic, J Danica; Malone, Misti L; Reed, Terrie L; Fukaya, Rie; Lookstein, Robert A; Handa, Nobuhiro; Aronow, Herbert D; Bertges, Daniel J; Jaff, Michael R; Tsai, Thomas T; Smale, Joshua A; Zaugg, Margo J; Thatcher, Robert J; Cronenwett, Jack L

    2018-02-01

    The current state of evaluating patients with peripheral artery disease and more specifically of evaluating medical devices used for peripheral vascular intervention (PVI) remains challenging because of the heterogeneity of the disease process, the multiple physician specialties that perform PVI, the multitude of devices available to treat peripheral artery disease, and the lack of consensus about the best treatment approaches. Because PVI core data elements are not standardized across clinical care, clinical trials, and registries, aggregation of data across different data sources and physician specialties is currently not feasible. Under the auspices of the U.S. Food and Drug Administration's Medical Device Epidemiology Network initiative-and its PASSION (Predictable and Sustainable Implementation of the National Registries) program, in conjunction with other efforts to align clinical data standards-the Registry Assessment of Peripheral Interventional Devices (RAPID) workgroup was convened. RAPID is a collaborative, multidisciplinary effort to develop a consensus lexicon and to promote interoperability across clinical care, clinical trials, and national and international registries of PVI. The current manuscript presents the initial work from RAPID to standardize clinical data elements and definitions, to establish a framework within electronic health records and health information technology procedural reporting systems, and to implement an informatics-based approach to promote the conduct of pragmatic clinical trials and registry efforts in PVI. Ultimately, we hope this work will facilitate and improve device evaluation and surveillance for patients, clinicians, health outcomes researchers, industry, policymakers, and regulators. Copyright © 2017 Society for Vascular Surgery. All rights reserved.

  14. Cost of Operating Central Cancer Registries and Factors That Affect Cost: Findings From an Economic Evaluation of Centers for Disease Control and Prevention National Program of Cancer Registries.

    Science.gov (United States)

    Tangka, Florence K L; Subramanian, Sujha; Beebe, Maggie Cole; Weir, Hannah K; Trebino, Diana; Babcock, Frances; Ewing, Jean

    2016-01-01

    The Centers for Disease Control and Prevention (CDC) evaluated the economics of the National Program of Cancer Registries to provide the CDC, the registries, and policy makers with the economics evidence-base to make optimal decisions about resource allocation. Cancer registry budgets are under increasing threat, and, therefore, systematic assessment of the cost will identify approaches to improve the efficiencies of this vital data collection operation and also justify the funding required to sustain registry operations. To estimate the cost of cancer registry operations and to assess the factors affecting the cost per case reported by National Program of Cancer Registries-funded central cancer registries. We developed a Web-based cost assessment tool to collect 3 years of data (2009-2011) from each National Program of Cancer Registries-funded registry for all actual expenditures for registry activities (including those funded by other sources) and factors affecting registry operations. We used a random-effects regression model to estimate the impact of various factors on cost per cancer case reported. The cost of reporting a cancer case varied across the registries. Central cancer registries that receive high-quality data from reporting sources (as measured by the percentage of records passing automatic edits) and electronic data submissions, and those that collect and report on a large volume of cases had significantly lower cost per case. The volume of cases reported had a large effect, with low-volume registries experiencing much higher cost per case than medium- or high-volume registries. Our results suggest that registries operate with substantial fixed or semivariable costs. Therefore, sharing fixed costs among low-volume contiguous state registries, whenever possible, and centralization of certain processes can result in economies of scale. Approaches to improve quality of data submitted and increasing electronic reporting can also reduce cost.

  15. ISHKS joint registry: A preliminary report

    Directory of Open Access Journals (Sweden)

    Jawahir A Pachore

    2013-01-01

    form can be downloaded from the website www.ishks.com. The information collected includes patient demographics, indication for surgery, implant details and in case of revision arthroplasty: the details of implants removed and the cause of failure of primary arthroplasty. These forms are mailed to the central registry office and the data is fed in computerized registry. Data collection started in October 2006. Results: Joint registry is a very important initiative of ISHKS and till date, have data of 34,478 TKAs and 3604 THAs, contributed by 42 surgeons across India. Some important observations have emerged. Data of 34,478 TKAs was assessed: These included 8612 males (25% and 25,866 females (75%. Average age was 64.4 years (Osteoarthritis range: 45 to 88 years; Rheumatoid arthritis range: 22 to 74 years. Average body mass index was 29.1 (Range: 18.1 to 42.9. The indication for TKA was osteoarthritis in 33,444 (97% and rheumatoid arthritis in 759 (2.2%. Total of 3604 THA procedures were recorded. These included 2162 (60% male patients and 1442 (40% female patients. Average age was 52 years (Range 17 to 85 years and average BMI was 25.8 (Range: 17.3 to 38.5. The indications for THA was AVN in 49%. Conclusion: The registry will become more meaningful in years to come. Active participation of all arthroplasty surgeons across India is vital for the success of the joints registry.

  16. Evaluating the completeness of the national ALS registry, United States.

    Science.gov (United States)

    Kaye, Wendy E; Wagner, Laurie; Wu, Ruoming; Mehta, Paul

    2018-02-01

    Our objective was to evaluate the completeness of the United States National ALS Registry (Registry). We compared persons with ALS who were passively identified by the Registry with those actively identified in the State and Metropolitan Area ALS Surveillance project. Cases in the two projects were matched using a combination of identifiers, including, partial social security number, name, date of birth, and sex. The distributions of cases from the two projects that matched/did not match were compared and Chi-square tests conducted to determine statistical significance. There were 5883 ALS cases identified by the surveillance project. Of these, 1116 died before the Registry started, leaving 4767 cases. We matched 2720 cases from the surveillance project to those in the Registry. The cases identified by the surveillance project that did not match cases in the Registry were more likely to be non-white, Hispanic, less than 65 years of age, and from western states. The methods used by the Registry to identify ALS cases, i.e. national administrative data and self-registration, worked well but missed cases. These findings suggest that developing strategies to identify and promote the Registry to those who were more likely to be missing, e.g. non-white and Hispanic, could be beneficial to improving the completeness of the Registry.

  17. Evaluation of Dicentrarchus labrax meats and the vegetable quality of Beta vulgaris var. Cicla farmed in freshwater and saltwater aquaponic systems

    OpenAIRE

    Nozzi, Valentina; Parisi, Giuliana; Di Crescenzo, Davide; Giordano, Mario; Carnevali, Oliana

    2016-01-01

    The purpose of this study is to exploit the euryhaline nature of commercially attractive species for their cultivation in freshwater aquaponic systems. This approach may increase the profitability of aquaponic production in coastal countries where the consumption of marine fish is traditional and of commercial relevance. For this purpose, juvenile European sea bass (Dicentrarchus labrax) were reared in an aquaponic freshwater (AFW) system and an aquaponic saltwater (ASW) system (salinity 20 p...

  18. Registry Assessment of Peripheral Interventional Devices (RAPID) - Registry Assessment of Peripheral Interventional Devices Core Data Elements.

    Science.gov (United States)

    Jones, W Schuyler; Krucoff, Mitchell W; Morales, Pablo; Wilgus, Rebecca W; Heath, Anne H; Williams, Mary F; Tcheng, James E; Marinac-Dabic, J Danica; Malone, Misti L; Reed, Terrie L; Fukaya, Rie; Lookstein, Robert; Handa, Nobuhiro; Aronow, Herbert D; Bertges, Daniel J; Jaff, Michael R; Tsai, Thomas T; Smale, Joshua A; Zaugg, Margo J; Thatcher, Robert J; Cronenwett, Jack L; Nc, Durham; Md, Silver Spring; Japan, Tokyo; Ny, New York; Ri, Providence; Vt, Burlington; Mass, Newton; Colo, Denver; Ariz, Tempe; Calif, Santa Clara; Minn, Minneapolis; Nh, Lebanon

    2018-01-25

    The current state of evaluating patients with peripheral artery disease and more specifically of evaluating medical devices used for peripheral vascular intervention (PVI) remains challenging because of the heterogeneity of the disease process, the multiple physician specialties that perform PVI, the multitude of devices available to treat peripheral artery disease, and the lack of consensus about the best treatment approaches. Because PVI core data elements are not standardized across clinical care, clinical trials, and registries, aggregation of data across different data sources and physician specialties is currently not feasible.Methods and Results:Under the auspices of the U.S. Food and Drug Administration's Medical Device Epidemiology Network initiative-and its PASSION (Predictable and Sustainable Implementation of the National Registries) program, in conjunction with other efforts to align clinical data standards-the Registry Assessment of Peripheral Interventional Devices (RAPID) workgroup was convened. RAPID is a collaborative, multidisciplinary effort to develop a consensus lexicon and to promote interoperability across clinical care, clinical trials, and national and international registries of PVI. The current manuscript presents the initial work from RAPID to standardize clinical data elements and definitions, to establish a framework within electronic health records and health information technology procedural reporting systems, and to implement an informatics-based approach to promote the conduct of pragmatic clinical trials and registry efforts in PVI. Ultimately, we hope this work will facilitate and improve device evaluation and surveillance for patients, clinicians, health outcomes researchers, industry, policymakers, and regulators.

  19. The Danish National Chronic Lymphocytic Leukemia Registry

    DEFF Research Database (Denmark)

    da Cunha-Bang, Caspar; Geisler, Christian Hartmann; Enggaard, Lisbeth

    2016-01-01

    AIM: In 2008, the Danish National Chronic Lymphocytic Leukemia Registry was founded within the Danish National Hematology Database. The primary aim of the registry is to assure quality of diagnosis and care of patients with chronic lymphocytic leukemia (CLL) in Denmark. Secondarily, to evaluate...

  20. Service registry design: an information service approach

    NARCIS (Netherlands)

    Ferreira Pires, Luis; Wang, J.; van Oostrum, Arjen; Wijnhoven, Alphonsus B.J.M.

    2010-01-01

    A service registry is a Service-Oriented Architecture (SOA) component that keeps a ‘catalogue’ of available services. It stores service specifications so that these specifications can be found by potential users. Discussions on the design of service registries currently focus on technical issues,

  1. Continuous Infraclavicular Block for Forearm Amputation After Being Bitten by a Saltwater Crocodile (Crocodylus Porosus: A Case Report

    Directory of Open Access Journals (Sweden)

    Chin-Hsi Chiu

    2009-08-01

    Full Text Available Two important issues after a complete right forearm amputation are replantation and ongoing pain management. There are no reports of successful forearm replantation as a consequence of a crocodile bite. Here, we discuss our pain management in a case of complete forearm amputation after a bite from a saltwater crocodile (Crocodylus porosus, which necessitated six further operations to achieve successful replantation. Continuous infraclavicular brachial plexus block was effective for acute pain control in this case. We strongly recommend performing the block with an indwelling catheter under ultrasound guidance for higher accuracy and safety.

  2. [History of the cancer registry in Mexico].

    Science.gov (United States)

    Allende-López, Aldo; Fajardo-Gutiérrez, Arturo

    2011-01-01

    A cancer registry is to record the data which let us to know the epidemiology of neoplasm, but led us take a decision in medical policy about this health problem that benefit patients. In this paper we did a brief historical review about models and attempts for having a cancer registry in Mexico. However, since 1940 "the fight against cancer" was declared, we have not had a confident cancer registry today validated and built with data from whole the country. In 1982, the Registro Nacional del Cancer was created. The design and validation of a registration card in four hospitals were the main results. In 1988, the Registro Nacional del Cancer was reinforced with a computerized system for facilitation the data capture. In 1994, it was signed the first interinstitutional agreement that led to Registro Histopatol6gico de Neoplasias Malignas. In 1996, the Instituto Mexicano del Seguro Social established a cancer registry in children in Mexico with the intention to have data from this population.

  3. Cationic surfactants for control of fresh- and saltwater mollusks in nuclear cooling systems

    International Nuclear Information System (INIS)

    Post, R.M.; Mallen, E.; Lehmann, F.

    1991-01-01

    One result of the release of the US Nuclear Regulatory Commission's Generic Letter 89-13, Service Water Problems Affecting Safety-Related Equipment, was the heightened awareness of the nuclear industry to the problems of macrofouling in heat exchange systems. The principal mollusk species that contribute to freshwater macrofouling problems are Asiatic Clam (southern United States) and Zebra Mussel (Great Lakes). The predominant saltwater fouling mollusks are the Blue Mussel (Pacific, northern Atlantic), Ribbed Mussel (southern Atlantic, Gulf Coast), and American Oyster (Atlantic, Gulf Coast). The nuclear community's awareness of macrofouling problems and the ineffectiveness of intermittent chlorination programs have led to the development of several chemical control technologies for eliminating macrofouling organism infestation. One technology that has proven effective for the control of macrofouling organisms is the periodic addition of a combination of two cationic charged surfactants, specifically, alkyldimethylbenzylammonium chloride (QUAT) and dodecyl guanidine hydrochloride (DGH). Experience with the cationic surfactants at several nuclear power plants is reported

  4. Facility Registry Service (FRS)

    Data.gov (United States)

    U.S. Environmental Protection Agency — The Facility Registry Service (FRS) provides an integrated source of comprehensive (air, water, and waste) environmental information about facilities across EPA,...

  5. The Danish Neuro-Oncology Registry

    DEFF Research Database (Denmark)

    Hansen, Steinbjørn; Nielsen, Jan; Laursen, René J

    2016-01-01

    BACKGROUND: The Danish Neuro-Oncology Registry (DNOR) is a nationwide clinical cancer database that has prospectively registered data on patients with gliomas since January 2009. The purpose of this study was to describe the establishment of the DNOR and further to evaluate the database completen......BACKGROUND: The Danish Neuro-Oncology Registry (DNOR) is a nationwide clinical cancer database that has prospectively registered data on patients with gliomas since January 2009. The purpose of this study was to describe the establishment of the DNOR and further to evaluate the database...

  6. 37 CFR 201.25 - Visual Arts Registry.

    Science.gov (United States)

    2010-07-01

    ... the copyright law. Visual Arts Registry Statements which are illegible or fall outside of the scope of... 37 Patents, Trademarks, and Copyrights 1 2010-07-01 2010-07-01 false Visual Arts Registry. 201.25 Section 201.25 Patents, Trademarks, and Copyrights COPYRIGHT OFFICE, LIBRARY OF CONGRESS COPYRIGHT OFFICE...

  7. National nephrectomy registries: Reviewing the need for population-based data.

    Science.gov (United States)

    Pearson, John; Williamson, Timothy; Ischia, Joseph; Bolton, Damien M; Frydenberg, Mark; Lawrentschuk, Nathan

    2015-09-01

    Nephrectomy is the cornerstone therapy for renal cell carcinoma (RCC) and continued refinement of the procedure through research may enhance patient outcomes. A national nephrectomy registry may provide the key information needed to assess the procedure at a national level. The aim of this study was to review nephrectomy data available at a population-based level in Australia and to benchmark these data against data from the rest of the world as an examination of the national nephrectomy registry model. A PubMed search identified records pertaining to RCC nephrectomy in Australia. A similar search identified records relating to established nephrectomy registries internationally and other surgical registries of clinical importance. These records were reviewed to address the stated aims of this article. Population-based data within Australia for nephrectomy were lacking. Key issues identified were the difficulty in benchmarking outcomes and no ongoing monitoring of trends. The care centralization debate, which questions whether small-volume centers provide comparable outcomes to high-volume centers, is ongoing. Patterns of adherence and the effectiveness of existing protocols are uncertain. A review of established international registries demonstrated that the registry model can effectively address issues comparable to those identified in the Australian literature. A national nephrectomy registry could address deficiencies identified in a given nation's nephrectomy field. The model is supported by evidence from international examples and will provide the population-based data needed for studies. Scope exists for possible integration with other registries to develop a more encompassing urological or surgical registry. Need remains for further exploration of the feasibility and practicalities of initiating such a registry including a minimum data set, outcome indicators, and auditing of data.

  8. REAC/TS Radiation Accident Registry: An Overview

    Energy Technology Data Exchange (ETDEWEB)

    Doran M. Christensen, DO, REAC/TS Associate Director and Staff Physician Becky Murdock, REAC/TS Registry and Health Physics Technician

    2012-12-12

    Over the past four years, REAC/TS has presented a number of case reports from its Radiation Accident Registry. Victims of radiological or nuclear incidents must meet certain dose criteria for an incident to be categorized as an “accident” and be included in the registry. Although the greatest numbers of “accidents” in the United States that have been entered into the registry involve radiation devices, the greater percentage of serious accidents have involved sealed sources of one kind or another. But if one looks at the kinds of accident scenarios that have resulted in extreme consequence, i.e., death, the greater share of deaths has occurred in medical settings.

  9. A review of national shoulder and elbow joint replacement registries

    DEFF Research Database (Denmark)

    Rasmussen, Jeppe V; Olsen, Bo S; Fevang, Bjørg-Tilde S

    2012-01-01

    The aim was to review the funding, organization, data handling, outcome measurements, and findings from existing national shoulder and elbow joint replacement registries; to consider the possibility of pooling data between registries; and to consider wether a pan european registry might be feasible....

  10. The Danish National Acute Leukemia Registry

    DEFF Research Database (Denmark)

    Østgård, Lene Sofie Granfeldt; Nørgaard, Jan Maxwell; Raaschou-Jensen, Klas Kræsten

    2016-01-01

    AIM OF DATABASE: The main aim of the Danish National Acute Leukemia Registry (DNLR) was to obtain information about the epidemiology of the hematologic cancers acute myeloid leukemia (AML), acute lymphoblastic leukemia (ALL), and myelodysplastic syndrome (MDS). STUDY POPULATION: The registry...... was established in January 2000 by the Danish Acute Leukemia Group and has been expanded over the years. It includes adult AML patients diagnosed in Denmark since 2000, ALL patients diagnosed since 2005, and MDS patients diagnosed since 2010. The coverage of leukemia patients exceeds 99%, and the coverage of MDS...... years. To ensure this high coverage, completeness, and quality of data, linkage to the Danish Civil Registration System and the Danish National Registry of Patients, and several programmed data entry checks are used. CONCLUSION: The completeness and positive predictive values of the leukemia data have...

  11. Presenting an evaluation model of the trauma registry software.

    Science.gov (United States)

    Asadi, Farkhondeh; Paydar, Somayeh

    2018-04-01

    Trauma is a major cause of 10% death in the worldwide and is considered as a global concern. This problem has made healthcare policy makers and managers to adopt a basic strategy in this context. Trauma registry has an important and basic role in decreasing the mortality and the disabilities due to injuries resulted from trauma. Today, different software are designed for trauma registry. Evaluation of this software improves management, increases efficiency and effectiveness of these systems. Therefore, the aim of this study is to present an evaluation model for trauma registry software. The present study is an applied research. In this study, general and specific criteria of trauma registry software were identified by reviewing literature including books, articles, scientific documents, valid websites and related software in this domain. According to general and specific criteria and related software, a model for evaluating trauma registry software was proposed. Based on the proposed model, a checklist designed and its validity and reliability evaluated. Mentioned model by using of the Delphi technique presented to 12 experts and specialists. To analyze the results, an agreed coefficient of %75 was determined in order to apply changes. Finally, when the model was approved by the experts and professionals, the final version of the evaluation model for the trauma registry software was presented. For evaluating of criteria of trauma registry software, two groups were presented: 1- General criteria, 2- Specific criteria. General criteria of trauma registry software were classified into four main categories including: 1- usability, 2- security, 3- maintainability, and 4-interoperability. Specific criteria were divided into four main categories including: 1- data submission and entry, 2- reporting, 3- quality control, 4- decision and research support. The presented model in this research has introduced important general and specific criteria of trauma registry software

  12. Rationale and design of a large registry on renal denervation: the Global SYMPLICITY registry.

    Science.gov (United States)

    Böhm, Michael; Mahfoud, Felix; Ukena, Christian; Bauer, Axel; Fleck, Eckart; Hoppe, Uta C; Kintscher, Ulrich; Narkiewicz, Krzysztof; Negoita, Manuela; Ruilope, Luis; Rump, L Christian; Schlaich, Markus; Schmieder, Roland; Sievert, Horst; Weil, Joachim; Williams, Bryan; Zeymer, Uwe; Mancia, Giuseppe

    2013-08-22

    Hypertension is a global healthcare concern associated with a wide range of comorbidities. The recognition that elevated sympathetic drive plays an important role in the pathogenesis of hypertension led to the use of renal artery denervation to interrupt the efferent and afferent sympathetic nerves between the brain and kidneys to lower blood pressure. Clinical trials of the Symplicity™ renal denervation system have demonstrated that radiofrequency ablation of renal artery nerves is safe and significantly lowers blood pressure in patients with severe resistant (systolic BP >160 mmHg) hypertension. Smaller ancillary studies in hypertensive patients suggest a benefit from renal denervation in a variety of conditions such as chronic kidney disease, glucose intolerance, sleep apnoea and heart failure. The Global SYMPLICITY registry, which incorporates the GREAT SYMPLICITY registry initiated in Germany, is being conducted worldwide to evaluate the safety and efficacy of treatment with the Symplicity renal denervation system in real-world uncontrolled hypertensive patients, looking first at subjects with severe resistant hypertension to confirm the results of prior clinical trials, but then also subjects with a wider range of baseline blood pressure and coexisting comorbidities. The rationale, design and first baseline data from the Global SYMPLICITY registry are presented.

  13. Implementation of a population-based epidemiological rare disease registry: study protocol of the amyotrophic lateral sclerosis (ALS)--registry Swabia.

    Science.gov (United States)

    Nagel, Gabriele; Unal, Hatice; Rosenbohm, Angela; Ludolph, Albert C; Rothenbacher, Dietrich

    2013-02-17

    The social and medical impact of rare diseases is increasingly recognized. Amyotrophic lateral sclerosis (ALS) is the most prevalent of the motor neuron diseases. It is characterized by rapidly progressive damage to the motor neurons with a survival of 2-5 years for the majority of patients. The objective of this work is to describe the study protocol and the implementation steps of the amyotrophic lateral sclerosis (ALS) registry Swabia, located in the South of Germany. The ALS registry Swabia started in October 2010 with both, the retrospective (01.10.2008-30.09.2010) and prospective (from 01.10.2010) collection of ALS cases, in a target population of 8.6 million persons in Southern Germany. In addition, a population based case-control study was implemented based on the registry that also included the collection of various biological materials.Retrospectively, 420 patients (222 men and 198 women) were identified. Prospectively data of ALS patients were collected, of which about 70% agreed to participate in the population-based case-control study. All participants in the case-control study provided also a blood sample. The prospective part of the study is ongoing. The ALS registry Swabia has been implemented successfully. In rare diseases such as ALS, the collaboration of registries, the comparison with external samples and biorepositories will facilitate to identify risk factors and to further explore the potential underlying pathophysiological mechanisms.

  14. Data Element Registry Services

    Data.gov (United States)

    U.S. Environmental Protection Agency — Data Element Registry Services (DERS) is a resource for information about value lists (aka code sets / pick lists), data dictionaries, data elements, and EPA data...

  15. Linking river, floodplain, and vadose zone hydrology to improve restoration of a coastal river affected by saltwater intrusion.

    Science.gov (United States)

    Kaplan, D; Muñoz-Carpena, R; Wan, Y; Hedgepeth, M; Zheng, F; Roberts, R; Rossmanith, R

    2010-01-01

    Floodplain forests provide unique ecological structure and function, which are often degraded or lost when watershed hydrology is modified. Restoration of damaged ecosystems requires an understanding of surface water, groundwater, and vadose (unsaturated) zone hydrology in the floodplain. Soil moisture and porewater salinity are of particular importance for seed germination and seedling survival in systems affected by saltwater intrusion but are difficult to monitor and often overlooked. This study contributes to the understanding of floodplain hydrology in one of the last bald cypress [Taxodium distichum (L.) Rich.] floodplain swamps in southeast Florida. We investigated soil moisture and porewater salinity dynamics in the floodplain of the Loxahatchee River, where reduced freshwater flow has led to saltwater intrusion and a transition to salt-tolerant, mangrove-dominated communities. Twenty-four dielectric probes measuring soil moisture and porewater salinity every 30 min were installed along two transects-one in an upstream, freshwater location and one in a downstream tidal area. Complemented by surface water, groundwater, and meteorological data, these unique 4-yr datasets quantified the spatial variability and temporal dynamics of vadose zone hydrology. Results showed that soil moisture can be closely predicted based on river stage and topographic elevation (overall Nash-Sutcliffe coefficient of efficiency = 0.83). Porewater salinity rarely exceeded tolerance thresholds (0.3125 S m(-1)) for bald cypress upstream but did so in some downstream areas. This provided an explanation for observed vegetation changes that both surface water and groundwater salinity failed to explain. The results offer a methodological and analytical framework for floodplain monitoring in locations where restoration success depends on vadose zone hydrology and provide relationships for evaluating proposed restoration and management scenarios for the Loxahatchee River.

  16. The Savant Syndrome Registry: A Preliminary Report.

    Science.gov (United States)

    Treffert, Darold A; Rebedew, David L

    2015-08-01

    A registry has been established to document certain characteristics on a sizeable worldwide sample of individuals with savant syndrome, a rare but remarkable condition in which persons with developmental disabilities, brain injury, or brain disease have some spectacular "islands" of skill or ability that stand in jarring, marked contrast to overall handicap. Of the 319 savants included in the registry, 90% are congenital savants, while 10% are acquired savants. The registry includes individuals from 33 countries, with 70% from the United States or Canada. Sex distribution was 79% male vs. 21% female (4:1). This report summarizes the findings in the congenital savant syndrome category of the registry. Among the individuals with congenital savant syndrome, the most common underlying disability was Autistic Spectrum Disorder (75%); various other central nervous system (CNS) disorders were present in the other 25%. Fifty-five percent possessed a single special skill, while 45% had multiple skills. Music was the most frequent principal skill followed by art, memory, mathematics, calendar calculating, language, visual-spatial/mechanical, athletic, computer, extrasensory perception, and other skills.

  17. 911 Master PSAP Registry

    Data.gov (United States)

    Federal Communications Commission — Updated as of 5Oct2017. The Registry lists PSAPs by an FCC assigned identification number, PSAP Name, State, County, City, and provides information on any type of...

  18. The Brazilian Twin Registry.

    Science.gov (United States)

    Ferreira, Paulo H; Oliveira, Vinicius C; Junqueira, Daniela R; Cisneros, Lígia C; Ferreira, Lucas C; Murphy, Kate; Ordoñana, Juan R; Hopper, John L; Teixeira-Salmela, Luci F

    2016-12-01

    The Brazilian Twin Registry (BTR) was established in 2013 and has impelled twin research in South America. The main aim of the initiative was to create a resource that would be accessible to the Brazilian scientific community as well as international researchers interested in the investigation of the contribution of genetic and environmental factors in the development of common diseases, phenotypes, and human behavior traits. The BTR is a joint effort between academic and governmental institutions from Brazil and Australia. The collaboration includes the Federal University of Minas Gerais (UFMG) in Brazil, the University of Sydney and University of Melbourne in Australia, the Australian Twin Registry, as well as the research foundations CNPq and CAPES in Brazil. The BTR is a member of the International Network of Twin Registries. Recruitment strategies used to register twins have been through participation in a longitudinal study investigating genetic and environmental factors for low back pain occurrence, and from a variety of sources including media campaigns and social networking. Currently, 291 twins are registered in the BTR, with data on demographics, zygosity, anthropometrics, and health history having been collected from 151 twins using a standardized self-reported questionnaire. Future BTR plans include the registration of thousands of Brazilian twins identified from different sources and collaborate nationally and internationally with other research groups interested on twin studies.

  19. Electrochemical behavior of Q235 steel in saltwater saturated with carbon dioxide based on new imidazoline derivative inhibitor

    International Nuclear Information System (INIS)

    Liu, F.G.; Du, M.; Zhang, J.; Qiu, M.

    2009-01-01

    The electrochemical behavior of carbon steel in saltwater saturated with CO 2 with/without an new synthesized imidazoline inhibitor was studied using polarization and electrochemical impedance spectrum (EIS), and the inhibitive ability of the inhibitor was evaluated by weight-loss method in 298-328 K temperature range. Results showed that the inhibition efficiency is up to above 80%, and imidazoline is a kind of mixed-type inhibitor. It was seen that the adsorption of imidazoline on Q235 steel can be fitted to Frumkin isotherm equation. Quantum chemistry calculation results show that the imidazoline ring and heteroatoms are the active sites of the inhibitors

  20. Paper 6: EUROCAT member registries: organization and activities

    DEFF Research Database (Denmark)

    Greenlees, Ruth; Neville, Amanda; Addor, Marie-Claude

    2011-01-01

    EUROCAT is a network of population-based congenital anomaly registries providing standardized epidemiologic information on congenital anomalies in Europe. There are three types of EUROCAT membership: full, associate, or affiliate. Full member registries send individual records of all congenital a...

  1. Efficacy of using data from angler-caught Burbot to estimate population rate functions

    Science.gov (United States)

    Brauer, Tucker A.; Rhea, Darren T.; Walrath, John D.; Quist, Michael C.

    2018-01-01

    The effective management of a fish population depends on the collection of accurate demographic data from that population. Since demographic data are often expensive and difficult to obtain, developing cost‐effective and efficient collection methods is a high priority. This research evaluates the efficacy of using angler‐supplied data to monitor a nonnative population of Burbot Lota lota. Age and growth estimates were compared between Burbot collected by anglers and those collected in trammel nets from two Wyoming reservoirs. Collection methods produced different length‐frequency distributions, but no difference was observed in age‐frequency distributions. Mean back‐calculated lengths at age revealed that netted Burbot grew faster than angled Burbot in Fontenelle Reservoir. In contrast, angled Burbot grew slightly faster than netted Burbot in Flaming Gorge Reservoir. Von Bertalanffy growth models differed between collection methods, but differences in parameter estimates were minor. Estimates of total annual mortality (A) of Burbot in Fontenelle Reservoir were comparable between angled (A = 35.4%) and netted fish (33.9%); similar results were observed in Flaming Gorge Reservoir for angled (29.3%) and netted fish (30.5%). Beverton–Holt yield‐per‐recruit models were fit using data from both collection methods. Estimated yield differed by less than 15% between data sources and reservoir. Spawning potential ratios indicated that an exploitation rate of 20% would be required to induce recruitment overfishing in either reservoir, regardless of data source. Results of this study suggest that angler‐supplied data are useful for monitoring Burbot population dynamics in Wyoming and may be an option to efficiently monitor other fish populations in North America.

  2. Potential effects of deepening the St. Johns River navigation channel on saltwater intrusion in the surficial aquifer system, Jacksonville, Florida

    Science.gov (United States)

    Bellino, Jason C.; Spechler, Rick M.

    2013-01-01

    The U.S. Army Corps of Engineers (USACE) has proposed dredging a 13-mile reach of the St. Johns River navigation channel in Jacksonville, Florida, deepening it to depths between 50 and 54 feet below North American Vertical Datum of 1988. The dredging operation will remove about 10 feet of sediments from the surficial aquifer system, including limestone in some locations. The limestone unit, which is in the lowermost part of the surficial aquifer system, supplies water to domestic wells in the Jacksonville area. Because of density-driven hydrodynamics of the St. Johns River, saline water from the Atlantic Ocean travels upstream as a saltwater “wedge” along the bottom of the channel, where the limestone is most likely to be exposed by the proposed dredging. A study was conducted to determine the potential effects of navigation channel deepening in the St. Johns River on salinity in the adjacent surficial aquifer system. Simulations were performed with each of four cross-sectional, variable-density groundwater-flow models, developed using SEAWAT, to simulate hypothetical changes in salinity in the surficial aquifer system as a result of dredging. The cross-sectional models were designed to incorporate a range of hydrogeologic conceptualizations to estimate the effect of uncertainty in hydrogeologic properties. The cross-sectional models developed in this study do not necessarily simulate actual projected conditions; instead, the models were used to examine the potential effects of deepening the navigation channel on saltwater intrusion in the surficial aquifer system under a range of plausible hypothetical conditions. Simulated results for modeled conditions indicate that dredging will have little to no effect on salinity variations in areas upstream of currently proposed dredging activities. Results also indicate little to no effect in any part of the surficial aquifer system along the cross section near River Mile 11 or in the water-table unit along the cross

  3. [Registries for rare diseases : OSSE - An open-source framework for technical implementation].

    Science.gov (United States)

    Storf, Holger; Schaaf, Jannik; Kadioglu, Dennis; Göbel, Jens; Wagner, Thomas O F; Ückert, Frank

    2017-05-01

    Meager amounts of data stored locally, a small number of experts, and a broad spectrum of technological solutions incompatible with each other characterize the landscape of registries for rare diseases in Germany. Hence, the free software Open Source Registry for Rare Diseases (OSSE) was created to unify and streamline the process of establishing specific rare disease patient registries. The data to be collected is specified based on metadata descriptions within the registry framework's so-called metadata repository (MDR), which was developed according to the ISO/IEC 11179 standard. The use of a central MDR allows for sharing the same data elements across any number of registries, thus providing a technical prerequisite for making data comparable and mergeable between registries and promoting interoperability.With OSSE, the foundation is laid to operate linked patient registries while respecting strong data protection regulations. Using the federated search feature, data for clinical studies can be identified across registries. Data integrity, however, remains intact since no actual data leaves the premises without the owner's consent. Additionally, registry solutions other than OSSE can participate via the OSSE bridgehead, which acts as a translator between OSSE registry networks and non-OSSE registries. The pseudonymization service Mainzelliste adds further data protection.Currently, more than 10 installations are under construction in clinical environments (including university hospitals in Frankfurt, Hamburg, Freiburg and Münster). The feedback given by the users will influence further development of OSSE. As an example, the installation process of the registry for undiagnosed patients at University Hospital Frankfurt is described in more detail.

  4. Mexican registry of pulmonary hypertension: REMEHIP.

    Science.gov (United States)

    Sandoval Zarate, Julio; Jerjes-Sanchez, Carlos; Ramirez-Rivera, Alicia; Zamudio, Tomas Pulido; Gutierrez-Fajardo, Pedro; Elizalde Gonzalez, Jose; Leon, Mario Seoane Garcia De; Gamez, Miguel Beltran; Abril, Francisco Moreno Hoyos; Michel, Rodolfo Parra; Aguilar, Humberto Garcia

    REMEHIP is a prospective, multicentre registry on pulmonary hypertension. The main objective will be to identify the clinical profile, medical care, therapeutic trends and outcomes in adult and pediatric Mexican patients with well-characterized pulmonary hypertension. REMEHIP a multicenter registry began in 2015 with a planned recruitment time of 12 months and a 4-year follow-up. The study population will comprise a longitudinal cohort study, collecting data on patients with prevalent and incident pulmonary hypertension. Will be included patients of age >2 years and diagnosis of pulmonary hypertension by right heart catheterization within Group 1 and Group 4 of the World Health Organization classification. The structure, data collection and data analysis will be based on quality current recommendations for registries. The protocol has been approved by institutional ethics committees in all participant centers. All patients will sign an informed consent form. Currently in Mexico, there is a need of observational registries that include patients with treatment in the everyday clinical practice so the data could be validated and additional information could be obtained versus the one from the clinical trials. In this way, REMEHIP emerges as a link among randomized clinical trials developed by experts and previous Mexican experience. Copyright © 2016 Instituto Nacional de Cardiología Ignacio Chávez. Publicado por Masson Doyma México S.A. All rights reserved.

  5. Implementation of a population-based epidemiological rare disease registry: study protocol of the amyotrophic lateral sclerosis (ALS - registry Swabia

    Directory of Open Access Journals (Sweden)

    Nagel Gabriele

    2013-02-01

    Full Text Available Abstract Background The social and medical impact of rare diseases is increasingly recognized. Amyotrophic lateral sclerosis (ALS is the most prevalent of the motor neuron diseases. It is characterized by rapidly progressive damage to the motor neurons with a survival of 2–5 years for the majority of patients. The objective of this work is to describe the study protocol and the implementation steps of the amyotrophic lateral sclerosis (ALS registry Swabia, located in the South of Germany. Methods/Design The ALS registry Swabia started in October 2010 with both, the retrospective (01.10.2008-30.09.2010 and prospective (from 01.10.2010 collection of ALS cases, in a target population of 8.6 million persons in Southern Germany. In addition, a population based case–control study was implemented based on the registry that also included the collection of various biological materials. Retrospectively, 420 patients (222 men and 198 women were identified. Prospectively data of ALS patients were collected, of which about 70% agreed to participate in the population-based case–control study. All participants in the case–control study provided also a blood sample. The prospective part of the study is ongoing. Discussion The ALS registry Swabia has been implemented successfully. In rare diseases such as ALS, the collaboration of registries, the comparison with external samples and biorepositories will facilitate to identify risk factors and to further explore the potential underlying pathophysiological mechanisms.

  6. [The role of drug registries in the post-marketing surveillance].

    Science.gov (United States)

    Traversa, Giuseppe; Sagliocca, Luciano; Magrini, Nicola; Venegoni, Mauro

    2013-06-01

    The aim of this article is to provide an introduction to issue of Recenti Progressi in Medicina, devoted to the role of drug registries in the post-marketing surveillance. We first motivate the need to implement registries as a tool in promoting the appropriateness of drug use and acquiring additional information on the risk-benefit profile of drugs. Then, the different role that can be played by registries in comparison with prescription monitoring systems and observational studies is clarified. The presentation of some of the most relevant registries established in Italy since the end of the '90s, with the analysis of their strengths and weaknesses, helps to understand some of the crucial issues that should be taken into account before a new registry is adopted. Specifically, we deal with the relationship between objectives - of appropriateness, effectiveness and safety - and methods; the overlapping between drug-based registries and disease-based ones; the duration and extension of data collection, which may be either exhaustive or based on a sampling frame; the importance of ensuring the quality of the data and to minimize the number of subjects who are lost to follow-up; the importance of infrastructures, and of ad hoc funding, for the functioning of a registry; the independence in data analysis and publication of findings.

  7. Ethical aspects of registry-based research in the Nordic countries.

    Science.gov (United States)

    Ludvigsson, Jonas F; Håberg, Siri E; Knudsen, Gun Peggy; Lafolie, Pierre; Zoega, Helga; Sarkkola, Catharina; von Kraemer, Stephanie; Weiderpass, Elisabete; Nørgaard, Mette

    2015-01-01

    National health care registries in the Nordic countries share many attributes, but different legal and ethical frameworks represent a challenge to promoting effective joint research. Internationally, there is a lack of knowledge about how ethical matters are considered in Nordic registry-based research, and a lack of knowledge about how Nordic ethics committees operate and what is needed to obtain an approval. In this paper, we review ethical aspects of registry-based research, the legal framework, the role of ethics review boards in the Nordic countries, and the structure of the ethics application. We discuss the role of informed consent in registry-based research and how to safeguard the integrity of study participants, including vulnerable subjects and children. Our review also provides information on the different government agencies that contribute registry-based data, and a list of the major health registries in Denmark, Finland, Iceland, Norway, and Sweden. Both ethical values and conditions for registry-based research are similar in the Nordic countries. While Denmark, Finland, Iceland, Norway, and Sweden have chosen different legal frameworks, these differences can be resolved through mutual recognition of ethical applications and by harmonizing the different systems, likely leading to increased collaboration and enlarged studies.

  8. Development of an International Prostate Cancer Outcomes Registry.

    Science.gov (United States)

    Evans, Sue M; Nag, Nupur; Roder, David; Brooks, Andrew; Millar, Jeremy L; Moretti, Kim L; Pryor, David; Skala, Marketa; McNeil, John J

    2016-04-01

    To establish a Prostate Cancer Outcomes Registry-Australia and New Zealand (PCOR-ANZ) for monitoring outcomes of prostate cancer treatment and care, in a cost-effective manner. Stakeholders were recruited based on their interest, importance in achieving the monitoring and reporting of clinical practice and patient outcomes, and in amalgamation of existing registries. Each participating jurisdiction is responsible for local governance, site recruitment, data collection, and data transfer into the PCOR-ANZ. To establish each local registry, hospitals and clinicians within a jurisdiction were approached to voluntarily contribute to the registry following relevant ethical approval. Patient contact occurs following notification of prostate cancer through a hospital or pathology report, or from a cancer registry. Patient registration is based on an opt-out model. The PCOR-ANZ is a secure web-based registry adhering to ISO 27001 standards. Based on a standardised minimum data set, information on demographics, diagnosis, treatment, outcomes, and patient reported quality of life, are collected. Eight of nine jurisdictions have agreed to contribute to the PCOR-ANZ. Each jurisdiction has commenced implementation of necessary infrastructure to support rapid rollout. PCOR-ANZ has defined a minimum data set for collection, to enable analysis of key quality indicators that will aid in assessing clinical practice and patient focused outcomes. PCOR-ANZ will provide a useful resource of risk-adjusted evidence-based data to clinicians, hospitals, and decision makers on prostate cancer clinical practice. © 2016 The Authors BJU International © 2016 BJU International Published by John Wiley & Sons Ltd.

  9. CIRSE Vascular Closure Device Registry

    International Nuclear Information System (INIS)

    Reekers, Jim A.; Müller-Hülsbeck, Stefan; Libicher, Martin; Atar, Eli; Trentmann, Jens; Goffette, Pierre; Borggrefe, Jan; Zeleňák, Kamil; Hooijboer, Pieter; Belli, Anna-Maria

    2011-01-01

    Purpose: Vascular closure devices are routinely used after many vascular interventional radiology procedures. However, there have been no major multicenter studies to assess the safety and effectiveness of the routine use of closure devices in interventional radiology. Methods: The CIRSE registry of closure devices with an anchor and a plug started in January 2009 and ended in August 2009. A total of 1,107 patients were included in the registry. Results: Deployment success was 97.2%. Deployment failure specified to access type was 8.8% [95% confidence interval (95% CI) 5.0–14.5] for antegrade access and 1.8% (95% CI 1.1–2.9) for retrograde access (P = 0.001). There was no difference in deployment failure related to local PVD at the access site. Calcification was a reason for deployment failure in only 5.9 cm, and two vessel occlusions. Conclusion: The conclusion of this registry of closure devices with an anchor and a plug is that the use of this device in interventional radiology procedures is safe, with a low incidence of serious access site complications. There seems to be no difference in complications between antegrade and retrograde access and other parameters.

  10. Trace element concentrations of wild saltwater crocodile eggs

    International Nuclear Information System (INIS)

    Manolis, S.C.; Webb, G.J.; Britton, A.R.; Jeffree, R.A.; Markich, S.J.

    2002-01-01

    Saltwater crocodiles (Crocodylus porosus) accumulate trace elements from the environment into their flesh and bones (Jeffree et al., 2001a). Elevated levels of metals (e.g. Hg, Zn, Pb), organochlorines (e.g. DDT) and radionuclides (e.g. radiocesium) have been recorded in blood, tissues and eggs of several crocodilian species (Manolis et al., this volume). In this study the concentrations of various elements (including metals) were measured in the yolk of C. porosus eggs collected from the Finniss River and two other distant nesting sites (Melacca Swamp, a spring-fed freshwater swamp; Adelaide River, a tidal river) during the 2000- 01 nesting season. Infertile eggs from 30 clutches (Adelaide 12, Melacca 8, Finniss 10) were opened and the yolk contents removed (after Webb et al., 1987) and frozen. Samples of yolk were then oven-dried, digested in nitric acid and hydrogen peroxide. The digest solutions were then analysed for 20 elements (see Table 1) using inductively coupled plasma mass spectroscopy. Similarities between the elemental composition of eggs from the three areas suggests that downstream contamination from Rum Jungle Mine is not apparent in C. porosus nesting in the Finniss River. These nesting areas are some 60 km downstream of the mine site, and contaminants are probably greatly diluted during the wet season. C. porosus were also intensively hunted in the Finniss River area during the 1950s and 1960s, until their protection in 1971 (Webb et al. 1984). Some females would have been recruited into the population after the period of mining. Long-term effects of the mine may be apparent in areas with Australian freshwater crocodiles (C. johnstoni), mainly upstream of C. porosus nesting areas and up to the mine. Examination of tissues and eggs of C. johnstoni may provide more information on the historical effects of the mine

  11. Statistical aspects of tumor registries, Hiroshima and Nagasaki

    Energy Technology Data Exchange (ETDEWEB)

    Ishida, M

    1961-02-24

    Statistical considerations are presented on the tumor registries established for purpose of studying radiation induced carcinoma in Hiroshima and Nagasaki by observing tumors developing in the survivors of these cities. In addition to describing the background and purpose of the tumor registries the report consists of two parts: (1) accuracy of reported tumor cases and (2) statistical aspects of the incidence of tumors based both on a current population and on a fixed sample. Under the heading background, discussion includes the difficulties in attaining complete registration; the various problems associated with the tumor registries; and the special characteristics of tumor registries in Hiroshima and Nagasaki. Beye's a posteriori probability formula was applied to the Type I and Type II errors in the autopsy data of Hiroshima ABCC. (Type I, diagnosis of what is not cancer as cancer; Type II, diagnosis of what is cancer as noncancer.) Finally, the report discussed the difficulties in estimating a current population of survivors; the advantages and disadvantages of analyses based on a fixed sample and on an estimated current population; the comparison of incidence rates based on these populations using the 20 months' data of the tumor registry in Hiroshima; and the sample size required for studying radiation induced carcinoma. 10 references, 1 figure, 8 tables.

  12. Patient registries: useful tools for clinical research in myasthenia gravis.

    Science.gov (United States)

    Baggi, Fulvio; Mantegazza, Renato; Antozzi, Carlo; Sanders, Donald

    2012-12-01

    Clinical registries may facilitate research on myasthenia gravis (MG) in several ways: as a source of demographic, clinical, biological, and immunological data on large numbers of patients with this rare disease; as a source of referrals for clinical trials; and by allowing rapid identification of MG patients with specific features. Physician-derived registries have the added advantage of incorporating diagnostic and treatment data that may allow comparison of outcomes from different therapeutic approaches, which can be supplemented with patient self-reported data. We report the demographic analysis of MG patients in two large physician-derived registries, the Duke MG Patient Registry, at the Duke University Medical Center, and the INNCB MG Registry, at the Istituto Neurologico Carlo Besta, as a preliminary study to assess the consistency of the two data sets. These registries share a common structure, with an inner core of common data elements (CDE) that facilitate data analysis. The CDEs are concordant with the MG-specific CDEs developed under the National Institute of Neurological Disorders and Stroke Common Data Elements Project. © 2012 New York Academy of Sciences.

  13. Uses and limitations of registry and academic databases.

    Science.gov (United States)

    Williams, William G

    2010-01-01

    A database is simply a structured collection of information. A clinical database may be a Registry (a limited amount of data for every patient undergoing heart surgery) or Academic (an organized and extensive dataset of an inception cohort of carefully selected subset of patients). A registry and an academic database have different purposes and cost. The data to be collected for a database is defined by its purpose and the output reports required for achieving that purpose. A Registry's purpose is to ensure quality care, an Academic Database, to discover new knowledge through research. A database is only as good as the data it contains. Database personnel must be exceptionally committed and supported by clinical faculty. A system to routinely validate and verify data integrity is essential to ensure database utility. Frequent use of the database improves its accuracy. For congenital heart surgeons, routine use of a Registry Database is an essential component of clinical practice. Copyright (c) 2010 Elsevier Inc. All rights reserved.

  14. Cancer Registry Data

    Centers for Disease Control (CDC) Podcasts

    2017-05-24

    Dr. Loria Pollack, a Senior Medical Epidemiologist, talks about the importance of cancer registry data to understanding how cancer affects the United States–now and in the future.  Created: 5/24/2017 by National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP).   Date Released: 5/24/2017.

  15. Molecular cloning and 3D model of first cytochrome P450 from CYP3A subfamily in saltwater crocodile (Crocodylus porosus).

    Science.gov (United States)

    Tabassum, Rabia

    2017-10-18

    Cytochrome P450s (CYPs) play critical role in oxidative metabolism of numerous xenobiotics and endogenous compounds. The first CYP3A subfamily member in saltwater crocodile has been cloned and modelled for three-dimensional (3D) structure. The full-length cDNA was obtained employing reverse transcription polymerase chain reaction (RT-PCR) strategy and rapid amplification of cDNA ends (RACE). The cDNA sequence of 1659 nucleotides includes 132 nucleotides from 5' untranslated region (UTR), an open reading frame of 1527 nucleotides encoding 509 amino acids designated as CYP3A163. The alignment of CYP3A163 sequence with CYP3A subfamily across the lineages exhibit the loss of 1 residue in birds and 7 residues in mammals in comparison to reptiles suggesting the adaptation processes during evolution. The amino acid identity of CYP3A163 with Alligator mississippiensis CYP3A77 and Homo sapiens CYP3A4 is 91% and 62% respectively. The 3D structure of CYP3A163 modelled using human CYP3A4 structure as a template with Phyre 2 software, represents high similarity with its functionally important motifs and catalytic domain. Both sequence and structure of CYP3A163 display the common and conserved features of CYP3A subfamily. Overall, this study provides primary molecular and structural data of CYP3A163 required to investigate the xenobiotic metabolism in saltwater crocodiles. Copyright © 2017 Elsevier Inc. All rights reserved.

  16. The EpiCom Survey-Registries Across Europe, Epidemiological Research and Beyond

    DEFF Research Database (Denmark)

    Gordon, Hannah; Langholz, Ebbe

    2017-01-01

    The 2015 EpiCom survey evaluated population, patient, and research registries across Europe. Information was collected from 38 countries. The registries included those falling within the remit of national statistics, hospital databases, twin and multiplex registries, inflammatory bowel disease [IBD...

  17. Integrating Desalination and Energy Storage using a Saltwater-based Hybrid Sodium-ion Supercapacitor.

    Science.gov (United States)

    Guo, Zhaowei; Ma, Yuanyuan; Dong, Xiaoli; Hou, Mengyan; Wang, Yonggang; Xia, Yongyao

    2018-06-11

    Ever-increasing freshwater scarcity and energy crisis problems require efficient seawater desalination and energy storage technologies; however, each target is generally considered separately. Herein, a hybrid sodium-ion supercapacitor, involving a carbon-coated nano-NaTi 2 (PO 4 ) 3 -based battery anode and an activated-carbon-based capacitive cathode, is developed to combine desalination and energy storage in one device. On charge, the supercapacitor removes salt in a flowing saltwater electrolyte through Cl - electrochemical adsorption at the cathode and Na + intercalation at the anode. Discharge delivers useful electric energy and regenerates the electrodes. This supercapacitor can be used not only for energy storage with promising electrochemical performance (i.e., high power, high efficiency, and long cycle life), but also as a desalination device with desalination capacity of 146.8 mg g -1 , much higher than most reported capacitive and battery desalination devices. Finally, we demonstrate renewables to usable electric energy and desalted water through combining commercial photovoltaics and this hybrid supercapacitor. © 2018 Wiley-VCH Verlag GmbH & Co. KGaA, Weinheim.

  18. Patient-reported outcome measures in arthroplasty registries

    DEFF Research Database (Denmark)

    Rolfson, Ola; Bohm, Eric; Franklin, Patricia

    2016-01-01

    The International Society of Arthroplasty Registries (ISAR) Patient-Reported Outcome Measures (PROMs) Working Group have evaluated and recommended best practices in the selection, administration, and interpretation of PROMs for hip and knee arthroplasty registries. The 2 generic PROMs in common use...... are the Short Form health surveys (SF-36 or SF-12) and EuroQol 5-dimension (EQ-5D). The Working Group recommends that registries should choose specific PROMs that have been appropriately developed with good measurement properties for arthroplasty patients. The Working Group recommend the use of a 1-item pain...... should consider the absolute level of pain, function, and general health status as well as improvement, missing data, approaches to analysis and case-mix adjustment, minimal clinically important difference, and minimal detectable change. The Working Group recommends data collection immediately before...

  19. Assessing the feasibility of a web-based registry for multiple orphan lung diseases: the Australasian Registry Network for Orphan Lung Disease (ARNOLD) experience.

    Science.gov (United States)

    Casamento, K; Laverty, A; Wilsher, M; Twiss, J; Gabbay, E; Glaspole, I; Jaffe, A

    2016-04-18

    We investigated the feasibility of using an online registry to provide prevalence data for multiple orphan lung diseases in Australia and New Zealand. A web-based registry, The Australasian Registry Network of Orphan Lung Diseases (ARNOLD) was developed based on the existing British Paediatric Orphan Lung Disease Registry. All adult and paediatric respiratory physicians who were members of the Thoracic Society of Australia and New Zealand in Australia and New Zealand were sent regular emails between July 2009 and June 2014 requesting information on patients they had seen with any of 30 rare lung diseases. Prevalence rates were calculated using population statistics. Emails were sent to 649 Australian respiratory physicians and 65 in New Zealand. 231 (32.4%) physicians responded to emails a total of 1554 times (average 7.6 responses per physician). Prevalence rates of 30 rare lung diseases are reported. A multi-disease rare lung disease registry was implemented in the Australian and New Zealand health care settings that provided prevalence data on orphan lung diseases in this region but was limited by under reporting.

  20. Dissolved carbon dynamics in the freshwater-saltwater mixing zone of a coastal river entering the Northern Gulf of Mexico

    Science.gov (United States)

    He, S.; Xu, Y. J.

    2017-12-01

    Estuaries play an important role in the dynamics of dissolved carbon from freshwater to marine systems. This study aims to determine how dissolved inorganic carbon (DIC) and dissolved organic carbon (DOC) concentrations change along an 88-km long estuarine river with salinity ranging from 0.02 to 29.50. The study is expected to elucidate which processes most likely control carbon dynamics in a freshwater-saltwater mixing system, and to evaluate the net metabolism of this estuary using mixing curves and stable isotope analyses. From November 2014 to February 2016, water samples were collected and in-situ measurements on ambient water conditions were performed during eighteen field trips at six sites from upstream to downstream of the Calcasieu River, which enters the Northern Gulf of Mexico in the southern United States. δ13CDIC and δ13CDOC were measured from May 2015 to February 2017 during five of the field trips. The DIC concentration and δ13CDIC increased rapidly with increasing salinity in the mixing zone. The DIC concentrations appeared to be largely influenced by conservative mixing. The δ13CDIC values were close to those suggested by the conservative mixing model for May 2015, June 2015 and November 2015, but lower than those for July 2015 and February 2016, suggesting that an estuarine river can fluctuate from a balanced to a heterotrophic system (i.e., production/respiration aquatic photosynthesis from carbon produced by terrestrial photosynthesis in a river-ocean continuum. These findings suggest that riverine dissolved carbon undergoes a rapid change in freshwater-saltwater mixing, and that these dynamics should be taken into account in carbon processing and budgeting in the world's estuarine systems.

  1. Cohort profile: the TrueNTH Global Registry - an international registry to monitor and improve localised prostate cancer health outcomes.

    Science.gov (United States)

    Evans, Sue M; Millar, Jeremy L; Moore, Caroline M; Lewis, John D; Huland, Hartwig; Sampurno, Fanny; Connor, Sarah E; Villanti, Paul; Litwin, Mark S

    2017-11-28

    Globally, prostate cancer treatment and outcomes for men vary according to where they live, their race and the care they receive. The TrueNTH Global Registry project was established as an international registry monitoring care provided to men with localised prostate cancer (CaP). Sites with existing CaP databases in Movember fundraising countries were invited to participate in the international registry. In total, 25 Local Data Centres (LDCs) representing 113 participating sites across 13 countries have nominated to contribute to the project. It will collect a dataset based on the International Consortium for Health Outcome Measures (ICHOM) standardised dataset for localised CaP. A governance strategy has been developed to oversee registry operation, including transmission of reversibly anonymised data. LDCs are represented on the Project Steering Committee, reporting to an Executive Committee. A Project Coordination Centre and Data Coordination Centre (DCC) have been established. A project was undertaken to compare existing datasets, understand capacity at project commencement (baseline) to collect the ICHOM dataset and assist in determining the final data dictionary. 21/25 LDCs provided data dictionaries for review. Some ICHOM data fields were well collected (diagnosis, treatment start dates) and others poorly collected (complications, comorbidities). 17/94 (18%) ICHOM data fields were relegated to non-mandatory fields due to poor capture by most existing registries. Participating sites will transmit data through a web interface biannually to the DCC. Recruitment to the TrueNTH Global Registry-PCOR project will commence in late 2017 with sites progressively contributing reversibly anonymised data following ethical review in local regions. Researchers will have capacity to source deidentified data after the establishment phase. Quality indicators are to be established through a modified Delphi approach in later 2017, and it is anticipated that reports on

  2. The German Aortic Valve Registry (GARY): a nationwide registry for patients undergoing invasive therapy for severe aortic valve stenosis.

    Science.gov (United States)

    Beckmann, A; Hamm, C; Figulla, H R; Cremer, J; Kuck, K H; Lange, R; Zahn, R; Sack, S; Schuler, G C; Walther, T; Beyersdorf, F; Böhm, M; Heusch, G; Funkat, A K; Meinertz, T; Neumann, T; Papoutsis, K; Schneider, S; Welz, A; Mohr, F W

    2012-07-01

    Background The increasing prevalence of severe aortic valve defects correlates with the increase of life expectancy. For decades, surgical aortic valve replacement (AVR), under the use of extracorporeal circulation, has been the gold standard for treatment of severe aortic valve diseases. In Germany ~12,000 patients receive isolated aortic valve surgery per year. For some time, percutaneous balloon valvuloplasty has been used as a palliative therapeutic option for very few patients. Currently, alternatives for the established surgical procedures such as transcatheter aortic valve implantation (TAVI) have become available, but there are only limited data from randomized studies or low-volume registries concerning long-time outcome. In Germany, the implementation of this new technology into hospital care increased rapidly in the past few years. Therefore, the German Aortic Valve Registry (GARY) was founded in July 2010 including all available therapeutic options and providing data from a large quantity of patients.Methods The GARY is assembled as a complete survey for all invasive therapies in patients with relevant aortic valve diseases. It evaluates the new therapeutic options and compares them to surgical AVR. The model for data acquisition is based on three data sources: source I, the mandatory German database for external performance measurement; source II, a specific registry dataset; and source III, a follow-up data sheet (generated by phone interview). Various procedures will be compared concerning observed complications, mortality, and quality of life up to 5 years after the initial procedure. Furthermore, the registry will enable a compilation of evidence-based indication criteria and, in addition, also a comparison of all approved operative procedures, such as Ross or David procedures, and the use of different mechanical or biological aortic valve prostheses.Results Since the launch of data acquisition in July 2010, almost all institutions performing

  3. Next-generation registries: fusion of data for care, and research.

    Science.gov (United States)

    Mandl, Kenneth D; Edge, Stephen; Malone, Chad; Marsolo, Keith; Natter, Marc D

    2013-01-01

    Disease-based registries are a critical tool for electronic data capture of high-quality, gold standard data for clinical research as well as for population management in clinical care. Yet, a legacy of significant operational costs, resource requirements, and poor data liquidity have limited their use. Research registries have engendered more than $3 Billion in HHS investment over the past 17 years. Health delivery systems and Accountable Care Organizations are investing heavily in registries to track care quality and follow-up of patient panels. Despite the investment, regulatory and financial models have often enforced a "single purpose" limitation on each registry, restricting the use of data to a pre-defined set of protocols. The need for cost effective, multi-sourced, and widely shareable registry data sets has never been greater, and requires next-generation platforms to robustly support multi-center studies, comparative effectiveness research, post-marketing surveillance and disease management. This panel explores diverse registry efforts, both academic and commercial, that have been implemented in leading-edge clinical, research, and hybrid use cases. Panelists present their experience in these areas as well as lessons learned, challenges addressed, and near innovations and advances.

  4. Demographics of US pediatric contact dermatitis registry providers.

    Science.gov (United States)

    Goldenberg, Alina; Jacob, Sharon E

    2015-01-01

    Children are as likely as adults to be sensitized and reactive to contact allergens. However, the prevailing data on pediatric allergic contact dermatitis are quantitatively and qualitatively limited because of a narrow geographic localization of data-reporting providers. The aim of the study was to present the first quarter results from the Loma Linda Pediatric Contact Dermatitis Registry focused on registered providers who self-identified as providing care for pediatric allergic contact dermatitis (ACD) within the United States. The US providers were invited to join the registry via completion of an online, secure, 11-question registration survey addressing demographics and clinical practice essentials. The presented results reflect data gathered within the first quarter of registry recruitment; registration is ongoing. Of 169 responders from 48 states, the majority of providers were female (60.4%), academic (55.6%), and dermatologists (76.3%). Based on individual provider averages, the minimum cumulative number of pediatric patch-test evaluations performed each year ranged between 1372 and 3468 children. The Pediatric Contact Dermatitis Registry provides a description of the current leaders in the realm of pediatric ACD and gaps, which are in need of attention. The registry allows for a collaborative effort to exchange information, educate providers, and foster investigative research with the hope of legislation that can reduce the disease burden of ACD in US children.

  5. The Italian Registry of Antiphospholipid Antibodies.

    Science.gov (United States)

    Finazzi, G

    1997-01-01

    The clinical importance of antiphospholipid antibodies (APA) derives from their association with a syndrome of venous and arterial thrombosis, recurrent fetal loss and thrombocytopenia known as the antiphospholipid syndrome (APS). The Italian Registry of Antiphospholipid Antibodies was set up in 1989 for the purpose of collecting a large number of patients with lupus anticoagulant (LA) or anticardiolipin antibodies (ACA) for clinical studies in order to obtain more information on the clinical features of APS. The Italian Registry has completed two clinical studies and proposed an international trial on the treatment of APS patients. These activities of the Registry are reviewed herein. Additional information has been obtained from pertinent articles and abstracts published in journals covered by the Science Citation Index and Medline. The first study of the Registry was a retrospective analysis of enrolled patients which showed that: a) the prevalence of thrombosis and thrombocytopenia was similar in cases with idiopathic APA or APA secondary to systemic lupus erythematosus, and b) the rate of thrombosis was significantly reduced in patients with severe thrombocytopenia but not in those with only a mild reduction of the platelet count. The second study was a prospective survey of the natural history of the disease, showing that a) previous thrombosis and ACA titer > 40 units were independent predictors of subsequent vascular complications; b) a history of miscarriage or thrombosis is significantly associated with adverse pregnancy outcome; c) hematological malignancies can develop during follow-up and patients with APA should be considered at increased risk of developing NHL. Thus the possibility of a hematologic neoplastic disease should be borne in mind in the initial evaluation and during the follow-up of these patients. The latest initiative of the Registry was the proposal of an international, randomized clinical trial (WAPS study) aimed at assessing the

  6. 42 CFR 483.156 - Registry of nurse aides.

    Science.gov (United States)

    2010-10-01

    ... the registry because they have performed no nursing or nursing-related services for a period of 24... individual was found not guilty in a court of law, or the State is notified of the individual's death. (2) The registry must remove entries for individuals who have performed no nursing or nursing-related...

  7. CIRSE Vascular Closure Device Registry

    Science.gov (United States)

    Müller-Hülsbeck, Stefan; Libicher, Martin; Atar, Eli; Trentmann, Jens; Goffette, Pierre; Borggrefe, Jan; Zeleňák, Kamil; Hooijboer, Pieter; Belli, Anna-Maria

    2010-01-01

    Purpose Vascular closure devices are routinely used after many vascular interventional radiology procedures. However, there have been no major multicenter studies to assess the safety and effectiveness of the routine use of closure devices in interventional radiology. Methods The CIRSE registry of closure devices with an anchor and a plug started in January 2009 and ended in August 2009. A total of 1,107 patients were included in the registry. Results Deployment success was 97.2%. Deployment failure specified to access type was 8.8% [95% confidence interval (95% CI) 5.0–14.5] for antegrade access and 1.8% (95% CI 1.1–2.9) for retrograde access (P = 0.001). There was no difference in deployment failure related to local PVD at the access site. Calcification was a reason for deployment failure in only 5.9 cm, and two vessel occlusions. Conclusion The conclusion of this registry of closure devices with an anchor and a plug is that the use of this device in interventional radiology procedures is safe, with a low incidence of serious access site complications. There seems to be no difference in complications between antegrade and retrograde access and other parameters. PMID:20981425

  8. Combined use of frequency‐domain electromagnetic and electrical resistivity surveys to delineate the freshwater/saltwater interface near saline lakes in the Nebraska Sand Hills, Nebraska, USA

    Science.gov (United States)

    Ong, John T.; White, Eric A.; Lane, John W.; Halihan, Todd; Zlotnik, Vitaly A; Butler, Dwain K.

    2009-01-01

    We investigate the use of frequency‐domain electromagnetic (FDEM) and electrical resistivity (ER) surveys for rapid and detailed characterization of the direction of lake‐aquifer fluxes and the configuration of salt plumes generated from saline lakes. This methodology was developed and applied at several lakes in the Nebraska Sand Hills, Nebraska, in an area with both freshwater and saline lakes hydraulically connected to the freshwater surficial aquifer. The FDEM survey was conducted by mounting the instrument on a fiberglass cart towed by an all‐terrain vehicle. The towed FDEM surveys covered about 25 km per day and served as a reconnaissance method for choosing locations for the more quantitative and detailed ER surveys. Around the saline lakes, areas with high electrical conductivity are consistent with the regional direction of ground‐water flow. Lower electrical conductivity was measured around the freshwater lakes with anomalies correlating to a paleovalley axis inferred from previous studies. The efficacy of this geophysical approach is attributed to: (1) significant contrast in electrical conductivity between freshwater and saltwater, (2) near‐surface location of the freshwater/saltwater interface, (3) minimal cultural interference, and (4) relative homogeneity of the aquifer materials.

  9. Primary healthcare-based diabetes registry in Puducherry: Design and methods

    Directory of Open Access Journals (Sweden)

    Subitha Lakshminarayanan

    2017-01-01

    Full Text Available Background: Diabetes registries monitor the population prevalence and incidence of diabetes, monitor diabetes control program, provide information of quality of care to health service providers, and provide a sampling frame for interventional studies. This study documents the process of establishing a prospective diabetes registry in a primary health-care setting in Puducherry. Methods: This is a facility-based prospective registry conducted in six randomly selected urban health centers in Puducherry, with enrollment of all known patients with diabetes attending chronic disease clinics. Administrative approvals were obtained from Government Health Services. Manuals for training of medical officers, health-care workers, and case report forms were developed. Diabetes registry was prepared using Epi Info software. Results: In the first phase, demographic characteristics, risk factors, complications, coexisting chronic conditions, lifestyle and medical management, and clinical outcomes were recorded. Around 2177 patients with diabetes have been registered in six Primary Health Centres out of a total of 2948 participants seeking care from chronic disease clinic. Registration coverage ranges from 61% to 105% in these centers. Conclusion: This study has documented methodological details, and learning experiences gained while developing a diabetes registry at the primary health care level and the scope for upscaling to a Management Information System for Diabetes and a State-wide Registry. Improvement in patient care through needs assessment and quality assurance in service delivery is an important theme envisioned by this registry.

  10. The Toxicology Investigators Consortium Case Registry--the 2014 Experience.

    Science.gov (United States)

    Rhyee, Sean H; Farrugia, Lynn; Campleman, Sharan L; Wax, Paul M; Brent, Jeffrey

    2015-12-01

    The Toxicology Investigators Consortium (ToxIC) Case Registry was established in 2010 by the American College of Medical Toxicology. The Registry includes all medical toxicology consultations performed at participating sites. The Registry was queried for all cases entered between January 1 and December 31, 2014. Specific data reviewed for analysis included demographics (age, gender, ethnicity), source of consultation, reasons for consultation, agents involved in toxicological exposures, signs, symptoms, clinical findings, fatalities, and treatment. In 2014, 9172 cases were entered in the Registry across 47 active member sites. Females accounted for 51.1 % of cases. The majority (65.1 %) of cases were adults between the ages of 19 and 65. Caucasians made up the largest identified ethnic group (48.9 %). Most Registry cases originated from the inpatient setting (93.5 %), with a large majority of these consultations coming from the emergency department or inpatient admission services. Intentional and unintentional pharmaceutical exposures continued to be the most frequent reasons for consultation, accounting for 61.7 % of cases. Among cases of intentional pharmaceutical exposure, 62.4 % were associated with a self-harm attempt. Non-pharmaceutical exposures accounted for 14.1 % of Registry cases. Similar to the past years, non-opioid analgesics, sedative-hypnotics, and opioids were the most commonly encountered agents. Clinical signs or symptoms were noted in 81.9 % of cases. There were 89 recorded fatalities (0.97 %). Medical treatment (e.g., antidotes, antivenom, chelators, supportive care) was rendered in 62.3 % of cases. Patient demographics and exposure characteristics in 2014 Registry cases remain similar to prior years. The majority of consultations arose in the acute care setting (emergency department or inpatient) and involved exposures to pharmaceutical products. Among exposures, non-opioid analgesics, sedative/hypnotics, and opioids were the most frequently

  11. An international registry for primary ciliary dyskinesia

    DEFF Research Database (Denmark)

    Werner, Claudius; Lablans, Martin; Ataian, Maximilian

    2016-01-01

    Primary ciliary dyskinesia (PCD) is a rare autosomal recessive disorder leading to chronic upper and lower airway disease. Fundamental data on epidemiology, clinical presentation, course and treatment strategies are lacking in PCD. We have established an international PCD registry to realise...... an unmet need for an international platform to systematically collect data on incidence, clinical presentation, treatment and disease course.The registry was launched in January 2014. We used internet technology to ensure easy online access using a web browser under www.pcdregistry.eu. Data from 201...... methods in addition to classical clinical symptoms. Preliminary analysis of lung function data demonstrated a mean annual decline of percentage predicted forced expiratory volume in 1 s of 0.59% (95% CI 0.98-0.22).Here, we present the development of an international PCD registry as a new promising tool...

  12. Czech Registry of Monoclonal Gammopathies - Technical Solution, Data Collection and Visualisation.

    Science.gov (United States)

    Brozova, L; Schwarz, D; Snabl, I; Kalina, J; Pavlickova, B; Komenda, M; Jarkovský, J; Němec, P; Horinek, D; Stefanikova, Z; Pour, L; Hájek, R; Maisnar, V

    2017-01-01

    The Registry of Monoclonal Gammopathies (RMG) was established by the Czech Myeloma Group in 2007. RMG is a registry designed for the collection of clinical data concerning diagnosis, treatment, treatment results and survival of patients with monoclonal gammopathies. Data on patients with monoclonal gammopathy of undetermined significance (MGUS), Waldenström macroglobulinaemia (WM), multiple myeloma (MM) or primary AL ("amyloid light-chain") amyloidosis are collected in the registry. Nineteen Czech centres and four Slovak centres currently contribute to the registry. The registry currently contains records on more than 5,000 patients with MM, almost 3,000 patients with MGUS, 170 patients with WM and 26 patients with primary AL amyloidosis, i.e. more than 8,000 records on patients with monoclonal gammopathies altogether. This paper describes technology employed for the collection, storage and subsequent online visualisation of data. The CLADE-IS platform is introduced as a new system for the collection and storage of data from the registry. The form structure and functions of the new system are described for all diagnoses in general; these functions facilitate data entry to the registry and minimise the error rate in data. Publicly available online visualisations of data on patients with MGUS, WM, MM or primary AL amyloidosis from all Czech or Slovak centres are introduced, together with authenticated visualisations of data on patients with MM from selected centres. The RMG represents a data basis that makes it possible to monitor the disease course in patients with monoclonal gammopathies on the population level.Key words: Registry of Monoclonal Gammopathies - RMG - registries - monoclonal gammopathies - CLADE-IS - data visualisation - database.

  13. The Lombardia Stroke Unit Registry: a year experience

    Directory of Open Access Journals (Sweden)

    Giuseppe Micieli

    2010-12-01

    Full Text Available Stroke is the third cause of death and the first long-term disability cause in industrialised countries. It is therefore an important problem, not only from a clinical point of view, but also because of the high costs involved in its management. The results of clinical trials, reviews and meta-analysis highlight the importance of the Stroke Unit in the correct and adequate management of the patient with stroke. This article describes the Lombardia Stroke Unit and the related Stroke Registry. In 2010 this Registry includes 27 Centres and recruits patients with acute stroke or transient ischaemic attacks (TIAs. The Registry aims at measuring performance parameters, identifying guidelines, non-compliance causes, and analysing care processes.

  14. Nordic Cancer Registries - an overview of their procedures and data comparability.

    Science.gov (United States)

    Pukkala, Eero; Engholm, Gerda; Højsgaard Schmidt, Lise Kristine; Storm, Hans; Khan, Staffan; Lambe, Mats; Pettersson, David; Ólafsdóttir, Elínborg; Tryggvadóttir, Laufey; Hakanen, Tiina; Malila, Nea; Virtanen, Anni; Johannesen, Tom Børge; Larønningen, Siri; Ursin, Giske

    2018-04-01

    The Nordic Cancer Registries are among the oldest population-based registries in the world, with more than 60 years of complete coverage of what is now a combined population of 26 million. However, despite being the source of a substantial number of studies, there is no published paper comparing the different registries. Therefore, we did a systematic review to identify similarities and dissimilarities of the Nordic Cancer Registries, which could possibly explain some of the differences in cancer incidence rates across these countries. We describe and compare here the core characteristics of each of the Nordic Cancer Registries: (i) data sources; (ii) registered disease entities and deviations from IARC multiple cancer coding rules; (iii) variables and related coding systems. Major changes over time are described and discussed. All Nordic Cancer Registries represent a high quality standard in terms of completeness and accuracy of the registered data. Even though the information in the Nordic Cancer Registries in general can be considered more similar than any other collection of data from five different countries, there are numerous differences in registration routines, classification systems and inclusion of some tumors. These differences are important to be aware of when comparing time trends in the Nordic countries.

  15. Utility of an Australasian registry for children undergoing radiation treatment

    International Nuclear Information System (INIS)

    Ahern, Verity

    2014-01-01

    The aim of this study was to evaluate the utility of an Australasian registry ('the Registry') for children undergoing radiation treatment (RT). Children under the age of 16years who received a course of radiation between January 1997 and December 2010 and were enrolled on the Registry form the subjects of this study. A total of 2232 courses of RT were delivered, predominantly with radical intent (87%). Registrations fluctuated over time, but around one-half of children diagnosed with cancer undergo a course of RT. The most prevalent age range at time of RT was 10–15years, and the most common diagnoses were central nervous system tumours (34%) and acute lymphoblastic leukaemia (20%). The Registry provides a reflection of the patterns of care of children undergoing RT in Australia and a mechanism for determining the resources necessary to manage children by RT (human, facilities and emerging technologies, such as proton therapy). It lacks the detail to provide information on radiotherapy quality and disease outcomes which should be the subject of separate audit studies. The utility of the Registry has been hampered by its voluntary nature and varying needs for consent. Completion of registry forms is a logical requirement for inclusion in the definition of a subspecialist in paediatric radiation oncology.

  16. The Toxicology Investigators Consortium Case Registry-the 2015 Experience.

    Science.gov (United States)

    Farrugia, Lynn A; Rhyee, Sean H; Campleman, Sharan L; Ruha, Anne-Michelle; Weigand, Timothy; Wax, Paul M; Brent, Jeffrey

    2016-09-01

    The American College of Medical Toxicology established the Toxicology Investigators Consortium (ToxIC) Case Registry in 2010. The Registry contains all medical toxicology consultations performed at participating sites. The Registry has continued to grow since its inception, and as of December 31, 2015, contains 43,099 cases. This is the sixth annual report of the ToxIC Registry, summarizing the additional 8115 cases entered in 2015. Cases were identified by a query of the Registry for all cases entered between January 1 and December 31, 2015. Specific data reviewed for analysis included demographics (age, race, gender), source of consultation, reason for consultation, agents and agent classes involved in exposures, signs, symptoms, clinical findings, fatalities, and treatment. By the end of 2015, there were 50 active sites, consisting of 101 separate health-care facilities; 51.2 % of cases involved females. Adults between the ages of 19 and 65 made up the majority (64.2 %) of Registry cases. Caucasian race was the most commonly reported (55.6 %); 9.6 % of cases were identified as Hispanic ethnicity. Inpatient and emergency department referrals were by far the most common referral sources (92.9 %). Intentional pharmaceutical exposures remained the most frequent reason for consultation, making up 52.3 % of cases. Of these intentional pharmaceutical exposures, 69 % represented an attempt at self-harm, and 85.6 % of these were a suicide attempt. Nonopioid analgesics, sedative-hypnotics, and antidepressant agents were the most commonly reported agent classes in 2015. Almost one-third of Registry cases involved a diagnosed toxidrome (32.8 %), with a sedative-hypnotic toxidrome being the most frequently described. Significant vital sign abnormalities were recorded in 25.3 % of cases. There were 98 fatalities reported in the Registry (1.2 %). Adverse drug reactions were reported in 4.3 % of cases. Toxicological treatment was given in 65.3 % of cases, with 33.0

  17. The Mataró Stroke Registry: a 10-year registry in a community hospital.

    Science.gov (United States)

    Palomeras Soler, E; Fossas Felip, P; Casado Ruiz, V; Cano Orgaz, A; Sanz Cartagena, P; Muriana Batiste, D

    2015-06-01

    A prospective stroke registry leads to improved knowledge of the disease. We present data on the Mataró Hospital Registry. In February-2002 a prospective stroke registry was initiated in our hospital. It includes sociodemographic data, previous diseases, clinical, topographic, etiological and prognostic data. We have analyzed the results of the first 10 years. A total of 2,165 patients have been included, 54.1% male, mean age 73 years. The most frequent vascular risk factor was hypertension (65.4%). Median NIHSS on admission: 3 (interquartile range, 1-8). Stroke subtype: 79.7% ischemic strokes, 10.9% hemorrhagic, and 9.4% TIA. Among ischemic strokes, the etiology was cardioembolic in 26.5%, large-vessel disease in 23.7%, and small-vessel in 22.9%. The most frequent topography of hemorrhages was lobar (47.4%), and 54.8% were attributed to hypertension. The median hospital stay was 8 days. At discharge, 60.7% of patients were able to return directly to their own home, and 52.7% were independent for their daily life activities. After 3 months these percentages were 76.9% and 62.9%, respectively. Hospital mortality was 6.5%, and after 3 months 10.9%. Our patient's profile is similar to those of other series, although the severity of strokes was slightly lower. Length of hospital stay, short-term and medium term disability, and mortality rates are good, if we compare them with other series. Copyright © 2013 Sociedad Española de Neurología. Published by Elsevier España, S.L.U. All rights reserved.

  18. Patient-reported outcome measures in arthroplasty registries

    DEFF Research Database (Denmark)

    Rolfson, Ola; Eresian Chenok, Kate; Bohm, Eric

    2016-01-01

    survey (SF-12) or the similar Veterans RAND 12-item health survey (VR-12). The most common specific PROMs were the Hip disability and Osteoarthritis Outcome Score (HOOS), the Knee injury and Osteoarthritis Outcome Score (KOOS), the Oxford Hip Score (OHS), the Oxford Knee Score (OKS), the Western Ontario...... of PROMs for hip and knee arthroplasty in registries worldwide. The 2 main types of PROMs include generic (general health) PROMs, which provide a measure of general health for any health state, and specific PROMs, which focus on specific symptoms, diseases, organs, body regions, or body functions...... all elective hip or knee arthroplasty patients and 6 registries collected PROMs for sample populations; 1 other registry had planned but had not started collection of PROMs. The most common generic instruments used were the EuroQol 5 dimension health outcome survey (EQ-5D) and the Short Form 12 health...

  19. Danish Hip Arthroscopy Registry

    DEFF Research Database (Denmark)

    Mygind-Klavsen, Bjarne; Lund, Bent; Nielsen, Torsten Grønbech

    2018-01-01

    PURPOSE: Predictors of outcome after femoroacetabular impingement (FAI) surgery are not well-documented. This study presents data from the Danish Hip Arthroscopy Registry (DHAR) for such analyses. The purpose of this study was to identify predictors of poor outcome after FAI surgery in a Danish FAI...

  20. The Danish Twin Registry

    DEFF Research Database (Denmark)

    Skytthe, Axel; Ohm Kyvik, Kirsten; Vilstrup Holm, Niels

    2011-01-01

    Introduction: The Danish Twin Registry is a unique source for studies of genetic, familial and environmental factors on life events, health conditions and diseases. Content: More than 85,000 twin pairs born 1870-2008 in Denmark. Validity and coverage: Four main ascertainment methods have been emp...

  1. Presenting an Evaluation Model for the Cancer Registry Software.

    Science.gov (United States)

    Moghaddasi, Hamid; Asadi, Farkhondeh; Rabiei, Reza; Rahimi, Farough; Shahbodaghi, Reihaneh

    2017-12-01

    As cancer is increasingly growing, cancer registry is of great importance as the main core of cancer control programs, and many different software has been designed for this purpose. Therefore, establishing a comprehensive evaluation model is essential to evaluate and compare a wide range of such software. In this study, the criteria of the cancer registry software have been determined by studying the documents and two functional software of this field. The evaluation tool was a checklist and in order to validate the model, this checklist was presented to experts in the form of a questionnaire. To analyze the results of validation, an agreed coefficient of %75 was determined in order to apply changes. Finally, when the model was approved, the final version of the evaluation model for the cancer registry software was presented. The evaluation model of this study contains tool and method of evaluation. The evaluation tool is a checklist including the general and specific criteria of the cancer registry software along with their sub-criteria. The evaluation method of this study was chosen as a criteria-based evaluation method based on the findings. The model of this study encompasses various dimensions of cancer registry software and a proper method for evaluating it. The strong point of this evaluation model is the separation between general criteria and the specific ones, while trying to fulfill the comprehensiveness of the criteria. Since this model has been validated, it can be used as a standard to evaluate the cancer registry software.

  2. The long term effects of early analysis of a trauma registry

    Directory of Open Access Journals (Sweden)

    Ashour Mazen

    2009-01-01

    Full Text Available Abstract Background We established a trauma registry in 2003 to collect data on trauma patients, which is a major cause of death in the United Arab Emirates (UAE. The aim of this paper is to report on the long term effects of our early analysis of this registry. Methods Data in the early stages of this trauma registry were collected for 503 patients during a period of 6 months in 2003. Data was collected on a paper form and then entered into the trauma registry using a self-developed Access database. Descriptive analysis was performed. Results Most were males (87%, the mean age (SD was 30.5 (14.9. UAE citizens formed 18.5%. Road traffic collisions caused an overwhelming 34.2% of injuries with 29.7% of those involving UAE citizens while work-related injuries were 26.2%. The early analysis of this registry had two major impacts. Firstly, the alarmingly high rate of UAE nationals in road traffic collisions standardized to the population led to major concerns and to the development of a specialized road traffic collision registry three years later. Second, the equally alarming high rate of work-related injuries led to collaboration with a Preventive Medicine team who helped with refining data elements of the trauma registry to include data important for research in trauma prevention. Conclusion Analysis of a trauma registry as early as six months can lead to useful information which has long term effects on the progress of trauma research and prevention.

  3. Ethical aspects of registry-based research in the Nordic countries

    Directory of Open Access Journals (Sweden)

    Ludvigsson JF

    2015-11-01

    Full Text Available Jonas F Ludvigsson,1,2 Siri E Håberg,3 Gun Peggy Knudsen,3 Pierre Lafolie,4,5 Helga Zoega,6 Catharina Sarkkola,7 Stephanie von Kraemer,7 Elisabete Weiderpass,1,7–10 Mette Nørgaard11 1Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, 2Department of Pediatrics, Örebro University Hospital, Örebro, Sweden; 3Norwegian Institute of Public Health, Oslo, Norway; 4Department of Medicine, Clinical Pharmacology Unit, 5The Stockholm Regional Ethical Review Board, Karolinska Institutet, Stockholm, Sweden; 6Center of Public Health Sciences, Faculty of Medicine, University of Iceland, Reykjavík, Iceland; 7Genetic Epidemiology Group, Folkhälsan Research Center, Helsinki, Finland; 8Department of Community Medicine, Faculty of Health Sciences, University of Tromsø, 9The Arctic University of Norway, Tromsø, 10Department of Research, Cancer Registry of Norway, Oslo, Norway; 11Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark Abstract: National health care registries in the Nordic countries share many attributes, but different legal and ethical frameworks represent a challenge to promoting effective joint research. Internationally, there is a lack of knowledge about how ethical matters are considered in Nordic registry-based research, and a lack of knowledge about how Nordic ethics committees operate and what is needed to obtain an approval. In this paper, we review ethical aspects of registry-based research, the legal framework, the role of ethics review boards in the Nordic countries, and the structure of the ethics application. We discuss the role of informed consent in registry-based research and how to safeguard the integrity of study participants, including vulnerable subjects and children. Our review also provides information on the different government agencies that contribute registry-based data, and a list of the major health registries in Denmark, Finland, Iceland, Norway, and

  4. The Danish Multiple Sclerosis Registry. History, data collection and validity

    DEFF Research Database (Denmark)

    Koch-Henriksen, N; Rasmussen, S; Stenager, E

    2001-01-01

    The Danish Multiple Sclerosis Registry was formally established in 1956 but started operating in 1949 with a nationwide prevalence survey. Since then, the Registry has continued collecting data on new and old cases of multiple sclerosis (MS) or suspected MS from multiple sources. The Registry...... instrument for monitoring incidence and prevalence, analysing survival, performing genetic analysis, providing unselected patient samples for clinical analyses, performing case-control studies and prospective studies and estimating the need for treatment and care....

  5. BioSWR--semantic web services registry for bioinformatics.

    Directory of Open Access Journals (Sweden)

    Dmitry Repchevsky

    Full Text Available Despite of the variety of available Web services registries specially aimed at Life Sciences, their scope is usually restricted to a limited set of well-defined types of services. While dedicated registries are generally tied to a particular format, general-purpose ones are more adherent to standards and usually rely on Web Service Definition Language (WSDL. Although WSDL is quite flexible to support common Web services types, its lack of semantic expressiveness led to various initiatives to describe Web services via ontology languages. Nevertheless, WSDL 2.0 descriptions gained a standard representation based on Web Ontology Language (OWL. BioSWR is a novel Web services registry that provides standard Resource Description Framework (RDF based Web services descriptions along with the traditional WSDL based ones. The registry provides Web-based interface for Web services registration, querying and annotation, and is also accessible programmatically via Representational State Transfer (REST API or using a SPARQL Protocol and RDF Query Language. BioSWR server is located at http://inb.bsc.es/BioSWR/and its code is available at https://sourceforge.net/projects/bioswr/under the LGPL license.

  6. BioSWR--semantic web services registry for bioinformatics.

    Science.gov (United States)

    Repchevsky, Dmitry; Gelpi, Josep Ll

    2014-01-01

    Despite of the variety of available Web services registries specially aimed at Life Sciences, their scope is usually restricted to a limited set of well-defined types of services. While dedicated registries are generally tied to a particular format, general-purpose ones are more adherent to standards and usually rely on Web Service Definition Language (WSDL). Although WSDL is quite flexible to support common Web services types, its lack of semantic expressiveness led to various initiatives to describe Web services via ontology languages. Nevertheless, WSDL 2.0 descriptions gained a standard representation based on Web Ontology Language (OWL). BioSWR is a novel Web services registry that provides standard Resource Description Framework (RDF) based Web services descriptions along with the traditional WSDL based ones. The registry provides Web-based interface for Web services registration, querying and annotation, and is also accessible programmatically via Representational State Transfer (REST) API or using a SPARQL Protocol and RDF Query Language. BioSWR server is located at http://inb.bsc.es/BioSWR/and its code is available at https://sourceforge.net/projects/bioswr/under the LGPL license.

  7. Quantitative analysis of production traits in saltwater crocodiles (Crocodylus porosus): II. age at slaughter.

    Science.gov (United States)

    Isberg, S R; Thomson, P C; Nicholas, F W; Barker, S G; Moran, C

    2005-12-01

    Crocodile morphometric (head, snout-vent and total length) measurements were recorded at three stages during the production chain: hatching, inventory [average age (+/-SE) is 265.1 +/- 0.4 days] and slaughter (average age is 1037.8 +/- 0.4 days). Crocodile skins are used for the manufacture of exclusive leather products, with the most common-sized skin sold having 35-45 cm in belly width. One of the breeding objectives for inclusion into a multitrait genetic improvement programme for saltwater crocodiles is the time taken for a juvenile to reach this size or age at slaughter. A multivariate restricted maximum likelihood analysis provided (co)variance components for estimating the first published genetic parameter estimates for these traits. Heritability (+/-SE) estimates for the traits hatchling snout-vent length, inventory head length and age at slaughter were 0.60 (0.15), 0.59 (0.12) and 0.40 (0.10) respectively. There were strong negative genetic (-0.81 +/- 0.08) and phenotypic (-0.82 +/- 0.02) correlations between age at slaughter and inventory head length.

  8. Data quality in the Danish National Acute Leukemia Registry

    DEFF Research Database (Denmark)

    Ostgård, Lene Sofie Granfeldt; Nørgaard, Jan Maxwell; Severinsen, Marianne Tang

    2013-01-01

    The Danish National Acute Leukemia Registry (DNLR) has documented coverage of above 98.5%. Less is known about the quality of the recorded data.......The Danish National Acute Leukemia Registry (DNLR) has documented coverage of above 98.5%. Less is known about the quality of the recorded data....

  9. Cardiac arrest risk standardization using administrative data compared to registry data.

    Directory of Open Access Journals (Sweden)

    Anne V Grossestreuer

    Full Text Available Methods for comparing hospitals regarding cardiac arrest (CA outcomes, vital for improving resuscitation performance, rely on data collected by cardiac arrest registries. However, most CA patients are treated at hospitals that do not participate in such registries. This study aimed to determine whether CA risk standardization modeling based on administrative data could perform as well as that based on registry data.Two risk standardization logistic regression models were developed using 2453 patients treated from 2000-2015 at three hospitals in an academic health system. Registry and administrative data were accessed for all patients. The outcome was death at hospital discharge. The registry model was considered the "gold standard" with which to compare the administrative model, using metrics including comparing areas under the curve, calibration curves, and Bland-Altman plots. The administrative risk standardization model had a c-statistic of 0.891 (95% CI: 0.876-0.905 compared to a registry c-statistic of 0.907 (95% CI: 0.895-0.919. When limited to only non-modifiable factors, the administrative model had a c-statistic of 0.818 (95% CI: 0.799-0.838 compared to a registry c-statistic of 0.810 (95% CI: 0.788-0.831. All models were well-calibrated. There was no significant difference between c-statistics of the models, providing evidence that valid risk standardization can be performed using administrative data.Risk standardization using administrative data performs comparably to standardization using registry data. This methodology represents a new tool that can enable opportunities to compare hospital performance in specific hospital systems or across the entire US in terms of survival after CA.

  10. Quality Registries in Sweden, Healthcare Improvements and Elderly Persons with Cognitive Impairments.

    Science.gov (United States)

    Mattsson, Titti

    2016-12-01

    Policy-makers, the medical industry and researchers are demonstrating a keen interest in the potential of large registries of patient data, both nationally and internationally. The registries offer promising ways to measure and develop operational quality within health and medical care services. As a result of certain favourable patient data regulations and government funding, the development of quality registries is advanced in Sweden. The combination of increasing demand for more cost-efficient healthcare that can accommodate the demographic development of a rapidly ageing population, and the emergence of eHealth with an increasing digitalisation of patient data, calls attention to quality registries as a possible way for healthcare improvements. However, even if the use of registries has many advantages, there are some drawbacks from a patient privacy point of view. This article aims to analyse this growing interdependence of quality registries for the healthcare sector. It discusses some lessons from the Swedish case, with particular focus on the collection of data from elderly persons with cognitive impairments.

  11. Marrow donor registry and cord blood bank in Taiwan.

    Science.gov (United States)

    Lee, Tsung Dao

    2002-08-01

    Unrelated Bone marrow transplant was initiated thirty years ago. Though there are over millions of donors registered with the bone marrow registries worldwide, Asian patients rarely find a match with all these donors. Tzu Chi Marrow Donor Registry was established to meet this need. It has become the largest Asian marrow donor registry in the world. With the introduction of high technology to test the HLA of the donors and recipients, the success rate of bone marrow transplant is greatly improved among Asian countries. 50% of blood disease Asian patients who cannot find a bone marrow matched donor will be complemented by the establishment of cord blood banks in Taiwan.

  12. Constructing a Local Potential Participant Registry to Improve Alzheimer's Disease Clinical Research Recruitment.

    Science.gov (United States)

    Grill, Joshua D; Hoang, Dan; Gillen, Daniel L; Cox, Chelsea G; Gombosev, Adrijana; Klein, Kirsten; O'Leary, Steve; Witbracht, Megan; Pierce, Aimee

    2018-01-01

    Potential participant registries are tools to address the challenge of slow recruitment to clinical research. In particular, registries may aid recruitment to secondary prevention clinical trials for Alzheimer's disease (AD), which enroll cognitively normal older individuals meeting specific genetic or biomarker criteria. Evidence of registry effectiveness is sparse, as is guidance on optimal designs or methods of conduct. We report our experiences of developing a novel local potential participant registry that implemented online enrollment and data collection. In the first year of operation, 957 individuals submitted email addresses to the registry, of whom 592 self-reported demographic, family history, and medical data. In addition, registrants provided information related to their interest and willingness to be contacted about studies. Local earned media and community education were the most effective methods of recruitment into the registry. Seventy-six (26%) of 298 registrants contacted about studies in the first year enrolled in those studies. One hundred twenty-nine registrants were invited to enroll in a preclinical AD trial, of whom 25 (18%) screened and 6 were randomized. These results indicate that registries can aid recruitment and provide needed guidance for investigators initiating new local registries.

  13. Cancer incidence in Morocco: report from Casablanca registry 2005 ...

    African Journals Online (AJOL)

    Introduction: Few population-based cancer registries are in place in developing countries. In order to know the burden of cancer in Moroccan population, cancer registry initiative was put in place in the Casablanca district, the biggest city of Morocco. Methods: The data collected covers 3.6 millions inhabitant and included ...

  14. Construction and management of ARDS/sepsis registry with REDCap.

    Science.gov (United States)

    Pang, Xiaoqing; Kozlowski, Natascha; Wu, Sulong; Jiang, Mei; Huang, Yongbo; Mao, Pu; Liu, Xiaoqing; He, Weiqun; Huang, Chaoyi; Li, Yimin; Zhang, Haibo

    2014-09-01

    The study aimed to construct and manage an acute respiratory distress syndrome (ARDS)/sepsis registry that can be used for data warehousing and clinical research. The workflow methodology and software solution of research electronic data capture (REDCap) was used to construct the ARDS/sepsis registry. Clinical data from ARDS and sepsis patients registered to the intensive care unit (ICU) of our hospital formed the registry. These data were converted to the electronic case report form (eCRF) format used in REDCap by trained medical staff. Data validation, quality control, and database management were conducted to ensure data integrity. The clinical data of 67 patients registered to the ICU between June 2013 and December 2013 were analyzed. Of the 67 patients, 45 (67.2%) were classified as sepsis, 14 (20.9%) as ARDS, and eight (11.9%) as sepsis-associated ARDS. The patients' information, comprising demographic characteristics, medical history, clinical interventions, daily assessment, clinical outcome, and follow-up data, was properly managed and safely stored in the ARDS/sepsis registry. Data efficiency was guaranteed by performing data collection and data entry twice weekly and every two weeks, respectively. The ARDS/sepsis database that we constructed and manage with REDCap in the ICU can provide a solid foundation for translational research on the clinical data of interest, and a model for development of other medical registries in the future.

  15. Childhood vesicoureteral reflux studies: registries and repositories sources and nosology.

    Science.gov (United States)

    Chesney, Russell W; Patters, Andrea B

    2013-12-01

    Despite several recent studies, the advisability of antimicrobial prophylaxis and certain imaging studies for urinary tract infections (UTIs) remains controversial. The role of vesicoureteral reflux (VUR) on the severity and re-infection rates for UTIs is also difficult to assess. Registries and repositories of data and biomaterials from clinical studies in children with VUR are valuable. Disease registries are collections of secondary data related to patients with a specific diagnosis, condition or procedure. Registries differ from indices in that they contain more extensive data. A research repository is an entity that receives, stores, processes and/or disseminates specimens (or other materials) as needed. It encompasses the physical location as well as the full range of activities associated with its operation. It may also be referred to as a biorepository. This report provides information about some current registries and repositories that include data and samples from children with VUR. It also describes the heterogeneous nature of the subjects, as some registries and repositories include only data or samples from patients with primary reflux while others also include those from patients with syndromic or secondary reflux. Copyright © 2012 Journal of Pediatric Urology Company. All rights reserved.

  16. Common variables in European pancreatic cancer registries

    DEFF Research Database (Denmark)

    De Leede, E. M.; Sibinga Mulder, B. G.; Bastiaannet, E.

    2016-01-01

    Background Quality assurance of cancer care is of utmost importance to detect and avoid under and over treatment. Most cancer data are collected by different procedures in different countries, and are poorly comparable at an international level. EURECCA, acronym for European Registration of Cancer...... registries, as well as specific pancreatic cancer audits/registries, were invited to participate in EURECCA Pancreas. Participating countries were requested to share an overview of their collected data items. Of the received datasets, a shared items list was made which creates insight in similarities between...

  17. The Danish Lung Cancer Registry

    DEFF Research Database (Denmark)

    Jakobsen, Erik; Rasmussen, Torben Riis

    2016-01-01

    AIM OF DATABASE: The Danish Lung Cancer Registry (DLCR) was established by the Danish Lung Cancer Group. The primary and first goal of the DLCR was to improve survival and the overall clinical management of Danish lung cancer patients. STUDY POPULATION: All Danish primary lung cancer patients since...... 2000 are included into the registry and the database today contains information on more than 50,000 cases of lung cancer. MAIN VARIABLES: The database contains information on patient characteristics such as age, sex, diagnostic procedures, histology, tumor stage, lung function, performance...... the results are commented for local, regional, and national audits. Indicator results are supported by descriptive reports with details on diagnostics and treatment. CONCLUSION: DLCR has since its creation been used to improve the quality of treatment of lung cancer in Denmark and it is increasingly used...

  18. Tumor registry data, Hiroshima and Nagasaki 1957-1959: malignant neoplasms

    Energy Technology Data Exchange (ETDEWEB)

    Harada, Tomin; Ide, Masao; Ishida, Morihiro; Troup, G M

    1963-10-03

    The report concerns three aspects of the Hiroshima and Nagasaki Tumor Registry data, 1957-1959: comparability, reliability and validity of incidence rates of malignant neoplasms obtained from the Tumor Registries and various statistical problems of registered data related to the Life Span Study sample and Adult Health Study sample; incidence rates of main site of malignant neoplasms obtained from the Tumor Registries are compared with those of the United States and Denmark; and incidence of malignant neoplasm among Hiroshima and Nagasaki A-bomb survivors. 15 references, 7 figures, 30 tables.

  19. Pilot for the Australian Breast Device Registry (ABDR): a national opt-out clinical quality registry for breast device surgery.

    Science.gov (United States)

    Hopper, Ingrid; Best, Renee L; McNeil, John J; Mulvany, Catherine M; Moore, Colin C M; Elder, Elisabeth; Pase, Marie; Cooter, Rodney D; Evans, Sue M

    2017-12-28

    To establish a pilot clinical quality registry (CQR) to monitor the quality of care and device performance for breast device surgery in Australia. All patients having breast device surgery from contributing hospitals in Australia. A literature review was performed which identified quality indicators for breast device surgery. A pilot CQR was established in 2011 to capture prospective data on breast device surgery. An interim Steering Committee and Management Committee were established to provide clinical governance, and guide quality indicator selection. The registry's minimum dataset was formulated in consultation with stakeholder groups; potential quality indicators were assessed in terms of (1) importance and relevance, (2) usability, (3) feasibility to collect and (4) scientific validity. Data collection was by a two-sided paper-based form with manual data entry. Seven sites were recruited, including one public hospital, four private hospitals and two day surgeries. Patients were recruited and opt-out consent used. The pilot breast device registry provides high-quality population-based data. It provides a model for developing a national CQR for breast devices; its minimum dataset and quality indicators reflect the opinions of the broad range of stakeholders. It is easily scalable, and has formed the basis for other international surgical groups establishing similar registries. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  20. The Ped-APS Registry: the antiphospholipid syndrome in childhood.

    Science.gov (United States)

    Avcin, T; Cimaz, R; Rozman, B

    2009-09-01

    In recent years, antiphospholipid syndrome (APS) has been increasingly recognised in various paediatric autoimmune and nonautoimmune diseases, but the relatively low prevalence and heterogeneity of APS in childhood made it very difficult to study in a systematic way. The project of an international registry of paediatric patients with APS (the Ped-APS Registry) was initiated in 2004 to foster and conduct multicentre, controlled studies with large number of paediatric APS patients. The Ped-APS Registry is organised as a collaborative project of the European Forum on Antiphospholipid Antibodies and Juvenile Systemic Lupus Erythematosus Working Group of the Paediatric Rheumatology European Society. Currently, it documents a standardised clinical, laboratory and therapeutic data of 133 children with antiphospholipid antibodies (aPL)-related thrombosis from 14 countries. The priority projects for future research of the Ped-APS Registry include prospective enrollment of new patients with aPL-related thrombosis, assessment of differences between the paediatric and adult APS, evaluation of proinflammatory genotype as a risk factor for APS manifestations in childhood and evaluation of patients with isolated nonthrombotic aPL-related manifestations.

  1. Development of a System-wide Predator Control Program: Stepwise Implementation of a Predation Index, Predator Control Fisheries, and Evaluation Plan in the Columbia River Basin; Northern Pikeminnow Management Program, 1998 Annual Report.

    Energy Technology Data Exchange (ETDEWEB)

    Young, Franklin R.; Wachtel, Mark L.; Petersen, Marc R.

    2003-03-01

    We are reporting on the progress of the Northern Pikeminnow Sport-Reward Fishery (NPSRF) in the lower Columbia and Snake rivers for 1998. The objectives of this project were to (1) implement a sport fishery that rewards anglers who harvest northern pikeminnow Ptychocheilus oregonensis {ge}279 mm (11 inches) total length, (2) collect catch data on selected fish species caught by fishery participants while targeting northern pikeminnow, (3) monitor and report incidental catch of sensitive salmonid species by anglers targeting northern pikeminnow and, (4) collect, monitor and report data on angler participation, catch and catch per angler day of northern pikeminnow during the season. A total of 108,903 northern pikeminnow {ge}279 mm were harvested during the 1998 season and 21,959 angler days were spent harvesting these fish. Harvest was below the seven year average of 150,874 and participation was well below the seven-year average of 51,013 angler days. Catch per angler day for all anglers during the season was 4.96 and exceeded the seven-year average of 2.96 northern pikeminnow per angler day. Peamouth Mylocheilus caurinus, and white sturgeon Acipencer transmontanus, were the other species most often harvested by returning NPSRF anglers targeting northern pikeminnow. Harvest of salmonids Oncorhynchus spp. by NPSRF anglers targeting northern pikeminnow remained below limits established by the National Marine Fisheries Service (NMFS).

  2. BioShaDock: a community driven bioinformatics shared Docker-based tools registry.

    Science.gov (United States)

    Moreews, François; Sallou, Olivier; Ménager, Hervé; Le Bras, Yvan; Monjeaud, Cyril; Blanchet, Christophe; Collin, Olivier

    2015-01-01

    Linux container technologies, as represented by Docker, provide an alternative to complex and time-consuming installation processes needed for scientific software. The ease of deployment and the process isolation they enable, as well as the reproducibility they permit across environments and versions, are among the qualities that make them interesting candidates for the construction of bioinformatic infrastructures, at any scale from single workstations to high throughput computing architectures. The Docker Hub is a public registry which can be used to distribute bioinformatic software as Docker images. However, its lack of curation and its genericity make it difficult for a bioinformatics user to find the most appropriate images needed. BioShaDock is a bioinformatics-focused Docker registry, which provides a local and fully controlled environment to build and publish bioinformatic software as portable Docker images. It provides a number of improvements over the base Docker registry on authentication and permissions management, that enable its integration in existing bioinformatic infrastructures such as computing platforms. The metadata associated with the registered images are domain-centric, including for instance concepts defined in the EDAM ontology, a shared and structured vocabulary of commonly used terms in bioinformatics. The registry also includes user defined tags to facilitate its discovery, as well as a link to the tool description in the ELIXIR registry if it already exists. If it does not, the BioShaDock registry will synchronize with the registry to create a new description in the Elixir registry, based on the BioShaDock entry metadata. This link will help users get more information on the tool such as its EDAM operations, input and output types. This allows integration with the ELIXIR Tools and Data Services Registry, thus providing the appropriate visibility of such images to the bioinformatics community.

  3. Advantages and limitations of national arthroplasty registries. The need for multicenter registries: the Rempro-SBQ

    Directory of Open Access Journals (Sweden)

    Luiz Sérgio Marcelino Gomes

    Full Text Available Abstract While the value of national arthroplasty registries (NAR for quality improvement in total hip arthroplasty (THA has already been widely reported, some methodological limitations associated with observational epidemiological studies that may interfere with the assessment of safety and efficacy of prosthetic implants have recently been described in the literature. Among the main limitations of NAR, the need for at least 80% compliance of all health institutions covered by the registry is emphasized; completeness equal or greater than 90% of all THA performed; restricted data collection; use of revision surgery as the sole criterion for outcome; and the inability of establishing a definite causal link with prosthetic dysfunction. The present article evaluates the advantages and limitations of NAR, in the light of current knowledge, which point to the need for a broader data collection and the use of more structured criteria for defining outcomes. In this scenario, the authors describe of idealization, conceptual and operational structure, and the project of implantation and implementation of a multicenter registry model, called Rempro-SBQ, which includes healthcare institutions already linked to the Brazilian Hip Society (Sociedade Brasileira de Quadril [SBQ]. This partnership enables the collection of more reliable and comprehensive data at a higher hierarchical level, with a significant reduction in maintenance and financing costs. The quality improvement actions supported by SBQ may enhance its effectiveness and stimulate greater adherence for collecting, storing, interpreting, and disseminating information (feedback.

  4. Advantages and limitations of national arthroplasty registries. The need for multicenter registries: the Rempro-SBQ.

    Science.gov (United States)

    Gomes, Luiz Sérgio Marcelino; Roos, Milton Valdomiro; Takata, Edmilson Takehiro; Schuroff, Ademir Antônio; Alves, Sérgio Delmonte; Camisa Júnior, Antero; Miranda, Ricardo Horta

    2017-01-01

    While the value of national arthroplasty registries (NAR) for quality improvement in total hip arthroplasty (THA) has already been widely reported, some methodological limitations associated with observational epidemiological studies that may interfere with the assessment of safety and efficacy of prosthetic implants have recently been described in the literature. Among the main limitations of NAR, the need for at least 80% compliance of all health institutions covered by the registry is emphasized; completeness equal or greater than 90% of all THA performed; restricted data collection; use of revision surgery as the sole criterion for outcome; and the inability of establishing a definite causal link with prosthetic dysfunction. The present article evaluates the advantages and limitations of NAR, in the light of current knowledge, which point to the need for a broader data collection and the use of more structured criteria for defining outcomes. In this scenario, the authors describe of idealization, conceptual and operational structure, and the project of implantation and implementation of a multicenter registry model, called Rempro-SBQ, which includes healthcare institutions already linked to the Brazilian Hip Society (Sociedade Brasileira de Quadril [SBQ]). This partnership enables the collection of more reliable and comprehensive data at a higher hierarchical level, with a significant reduction in maintenance and financing costs. The quality improvement actions supported by SBQ may enhance its effectiveness and stimulate greater adherence for collecting, storing, interpreting, and disseminating information (feedback).

  5. The Corrona US registry of rheumatic and autoimmune diseases.

    Science.gov (United States)

    Kremer, Joel M

    2016-01-01

    The Corrona US national registry collects data concerning patient status from both the rheumatologist and patient at routine clinical encounters. Corrona has functioning disease registries in rheumatoid arthritis, psoriatic arthritis, spondyloarthropathies, psoriasis and inflammatory bowel disease. Corrona merges data concerning long-term effectiveness and safety, as well as comparative and cost effectiveness of agents to treat these autoimmune diseases.

  6. An innovative and collaborative partnership between patients with rare disease and industry-supported registries: the Global aHUS Registry

    Directory of Open Access Journals (Sweden)

    Len Woodward

    2016-11-01

    Full Text Available Abstract Background Patients are becoming increasingly involved in research which can promote innovation through novel ideas, support patient-centred actions, and facilitate drug development. For rare diseases, registries that collect data from patients can increase knowledge of the disease’s natural history, evaluate clinical therapies, monitor drug safety, and measure quality of care. The active participation of patients is expected to optimise rare-disease management and improve patient outcomes. However, few reports address the type and frequency of interactions involving patients, and what research input patient groups have. Here, we describe a collaboration between an international group of patient organisations advocating for patients with atypical haemolytic uraemic syndrome (aHUS, the aHUS Alliance, and an international aHUS patient registry (ClinicalTrials.gov NCT01522183. Results The aHUS Registry Scientific Advisory Board (SAB invited the aHUS Alliance to submit research ideas important to patients with aHUS. This resulted in 24 research suggestions from patients and patient organisations being presented to the SAB. The proposals were classified under seven categories, the most popular of which were understanding factors that cause disease manifestations and learning more about the clinical and psychological/social impact of living with the disease. Subsequently, aHUS Alliance members voted for up to five research priorities. The top priority was: “What are the outcomes of a transplant without eculizumab and what non-kidney damage is likely in patients with aHUS?”. This led directly to the initiation of an ongoing analysis of the data collected in the Registry on patients with kidney transplants. Conclusion This collaboration resulted in several topics proposed by the aHUS Alliance being selected as priority activities for the aHUS Registry, with one new analysis already underway. A clear pathway was established for engagement

  7. Economic evaluation of Mumbai and its satellite cancer registries: Implications for expansion of data collection.

    Science.gov (United States)

    Koyande, Shravani; Subramanian, Sujha; Edwards, Patrick; Hoover, Sonja; Deshmane, Vinay; Tankga, Florence; Dikshit, Rajesh; Saraiya, Mona

    2016-12-01

    The Mumbai Cancer Registry is a population-based cancer registry that has been in operation for more than five decades and has successfully initiated and integrated three satellite registries in Pune, Nagpur, and Aurangabad, each covering specific urban populations of the Indian state Maharashtra. Data collectors at the satellites perform data abstraction, but Mumbai carries out all other core registration activities such as data analysis and quality assurance. Each of the three satellite registries follows the same data collection methodology as the main Mumbai Cancer Registry. This study examines the cost of operating the Mumbai and its satellite cancer registries. We modified and used the Centers for Disease Control and Prevention's (CDC's) International Registry Costing Tool (IntRegCosting Tool) to collect cost and resource use data for the Mumbai Cancer Registry and three satellites. Almost 60% of the registration expenditure was borne by the Indian Cancer Society, which hosts the Mumbai Cancer Registry, and more than half of the registry expenditure was related to data collection activities. Across the combined registries, 93% of the expenditure was spent on labor. Overall, registration activities had a low cost per case of 226.10 Indian rupees (or a little less than 4.00 US dollars in 2014 [used average exchange rate in 2014: 1 US $=60 Indian rupees]). The centralization of fixed-cost activities in Mumbai likely resulted in economies of scale in operating the Mumbai and satellite registries, which, together, report on almost 20,000 cancer cases annually. In middle-income countries like India, where financial resources are limited, the operational framework provided by the Mumbai and satellite registries can serve as a model for other registries looking to expand data collection. Copyright © 2016 Elsevier Ltd. All rights reserved.

  8. Economic evaluation of Mumbai and its satellite cancer registries: Implications for expansion of data collection☆

    Science.gov (United States)

    Koyande, Shravani; Subramanian, Sujha; Edwards, Patrick; Hoover, Sonja; Deshmane, Vinay; Tankga, Florence; Dikshit, Rajesh; Saraiya, Mona

    2018-01-01

    Background The Mumbai Cancer Registry is a population-based cancer registry that has been in operation for more than five decades and has successfully initiated and integrated three satellite registries in Pune, Nagpur, and Aurangabad, each covering specific urban populations of the Indian state Maharashtra. Data collectors at the satellites perform data abstraction, but Mumbai carries out all other core registration activities such as data analysis and quality assurance. Each of the three satellite registries follows the same data collection methodology as the main Mumbai Cancer Registry. This study examines the cost of operating the Mumbai and its satellite cancer registries. Methods We modified and used the Centers for Disease Control and Prevention’s (CDC’s) International Registry Costing Tool (IntRegCosting Tool) to collect cost and resource use data for the Mumbai Cancer Registry and three satellites. Results Almost 60% of the registration expenditure was borne by the Indian Cancer Society, which hosts the Mumbai Cancer Registry, and more than half of the registry expenditure was related to data collection activities. Across the combined registries, 93% of the expenditure was spent on labor. Overall, registration activities had a low cost per case of 226.10 Indian rupees (or a little less than 4.00 US dollars in 2014 [used average exchange rate in 2014: 1 US $ = 60 Indian rupees]). Conclusion The centralization of fixed-cost activities in Mumbai likely resulted in economies of scale in operating the Mumbai and satellite registries, which, together, report on almost 20,000 cancer cases annually. In middle-income countries like India, where financial resources are limited, the operational framework provided by the Mumbai and satellite registries can serve as a model for other registries looking to expand data collection. PMID:27726981

  9. EPA Facility Registry Service (FRS): RCRA

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of hazardous waste...

  10. Standard Test Method for Saltwater Pressure Immersion and Temperature Testing of Photovoltaic Modules for Marine Environments

    CERN Document Server

    American Society for Testing and Materials. Philadelphia

    2010-01-01

    1.1 This test method provides a procedure for determining the ability of photovoltaic modules to withstand repeated immersion or splash exposure by seawater as might be encountered when installed in a marine environment, such as a floating aid-to-navigation. A combined environmental cycling exposure with modules repeatedly submerged in simulated saltwater at varying temperatures and under repetitive pressurization provides an accelerated basis for evaluation of aging effects of a marine environment on module materials and construction. 1.2 This test method defines photovoltaic module test specimens and requirements for positioning modules for test, references suitable methods for determining changes in electrical performance and characteristics, and specifies parameters which must be recorded and reported. 1.3 This test method does not establish pass or fail levels. The determination of acceptable or unacceptable results is beyond the scope of this test method. 1.4 The values stated in SI units are to be ...

  11. CIRSE Vascular Closure Device Registry

    NARCIS (Netherlands)

    Reekers, Jim A.; Müller-Hülsbeck, Stefan; Libicher, Martin; Atar, Eli; Trentmann, Jens; Goffette, Pierre; Borggrefe, Jan; Zeleňák, Kamil; Hooijboer, Pieter; Belli, Anna-Maria

    2011-01-01

    Vascular closure devices are routinely used after many vascular interventional radiology procedures. However, there have been no major multicenter studies to assess the safety and effectiveness of the routine use of closure devices in interventional radiology. The CIRSE registry of closure devices

  12. Establishment and use of national registries for actinide elements in humans

    International Nuclear Information System (INIS)

    1996-05-01

    This TECDOC covers all aspects of the establishment and use of registries for actinide elements in Member States. These aspects include assessing the need for such registries; defining scope of the work and developing objectives; administration; organization and staffing; policies; practices; procedures; protocols; registration and enrollment; data collection and evaluation; establishing and analytical laboratory; publication of results and application of findings. Not all aspects will be relevant to all Member States establishing such registries. 1 tab

  13. Establishment and use of national registries for actinide elements in humans

    Energy Technology Data Exchange (ETDEWEB)

    NONE

    1996-05-01

    This TECDOC covers all aspects of the establishment and use of registries for actinide elements in Member States. These aspects include assessing the need for such registries; defining scope of the work and developing objectives; administration; organization and staffing; policies; practices; procedures; protocols; registration and enrollment; data collection and evaluation; establishing and analytical laboratory; publication of results and application of findings. Not all aspects will be relevant to all Member States establishing such registries. 1 tab.

  14. EPA Facility Registry Service (FRS): NCDB

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  15. EPA Facility Registry Service (FRS): BRAC

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  16. EPA Facility Registry Service (FRS): BIA

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  17. EPA Facility Registry Service (FRS): RADINFO

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  18. Veterans Affairs Central Cancer Registry (VACCR)

    Data.gov (United States)

    Department of Veterans Affairs — The Veterans Affairs Central Cancer Registry (VACCR) receives and stores information on cancer diagnosis and treatment constraints compiled and sent in by the local...

  19. EPA Facility Registry Service (FRS): TRI

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  20. EPA Facility Registry Service (FRS): ICIS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  1. EPA Facility Registry Service (FRS): RBLC

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  2. EPA Facility Registry System (FRS): NCES

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  3. EPA Facility Registry Service (FRS): LANDFILL

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of non-hazardous waste...

  4. EPA Facility Registry Service (FRS): NEI

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  5. EPA Facility Registry Service (FRS): CAMDBS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  6. EPA Facility Registry System (FRS): NEPT

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  7. EPA Facility Registry Service (FRS): SDWIS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  8. EPA Facility Registry Service (FRS): RMP

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  9. EPA Facility Registry Service (FRS): OIL

    Data.gov (United States)

    U.S. Environmental Protection Agency — This dataset contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link to the Oil...

  10. Reducing selection bias in case-control studies from rare disease registries.

    Science.gov (United States)

    Cole, J Alexander; Taylor, John S; Hangartner, Thomas N; Weinreb, Neal J; Mistry, Pramod K; Khan, Aneal

    2011-09-12

    In clinical research of rare diseases, where small patient numbers and disease heterogeneity limit study design options, registries are a valuable resource for demographic and outcome information. However, in contrast to prospective, randomized clinical trials, the observational design of registries is prone to introduce selection bias and negatively impact the validity of data analyses. The objective of the study was to demonstrate the utility of case-control matching and the risk-set method in order to control bias in data from a rare disease registry. Data from the International Collaborative Gaucher Group (ICGG) Gaucher Registry were used as an example. A case-control matching analysis using the risk-set method was conducted to identify two groups of patients with type 1 Gaucher disease in the ICGG Gaucher Registry: patients with avascular osteonecrosis (AVN) and those without AVN. The frequency distributions of gender, decade of birth, treatment status, and splenectomy status were presented for cases and controls before and after matching. Odds ratios (and 95% confidence intervals) were calculated for each variable before and after matching. The application of case-control matching methodology results in cohorts of cases (i.e., patients with AVN) and controls (i.e., patients without AVN) who have comparable distributions for four common parameters used in subject selection: gender, year of birth (age), treatment status, and splenectomy status. Matching resulted in odds ratios of approximately 1.00, indicating no bias. We demonstrated bias in case-control selection in subjects from a prototype rare disease registry and used case-control matching to minimize this bias. Therefore, this approach appears useful to study cohorts of heterogeneous patients in rare disease registries.

  11. The trauma registry compared to All Patient Refined Diagnosis Groups (APR-DRG).

    Science.gov (United States)

    Hackworth, Jodi; Askegard-Giesmann, Johanna; Rouse, Thomas; Benneyworth, Brian

    2017-05-01

    Literature has shown there are significant differences between administrative databases and clinical registry data. Our objective was to compare the identification of trauma patients using All Patient Refined Diagnosis Related Groups (APR-DRG) as compared to the Trauma Registry and estimate the effects of those discrepancies on utilization. Admitted pediatric patients from 1/2012-12/2013 were abstracted from the trauma registry. The patients were linked to corresponding administrative data using the Pediatric Health Information System database at a single children's hospital. APR-DRGs referencing trauma were used to identify trauma patients. We compared variables related to utilization and diagnosis to determine the level of agreement between the two datasets. There were 1942 trauma registry patients and 980 administrative records identified with trauma-specific APR-DRG during the study period. Forty-two percent (816/1942) of registry records had an associated trauma-specific APR-DRG; 69% of registry patients requiring ICU care had trauma APR-DRGs; 73% of registry patients with head injuries had trauma APR-DRGs. Only 21% of registry patients requiring surgical management had associated trauma APR-DRGs, and 12.5% of simple fractures had associated trauma APR-DRGs. APR-DRGs appeared to only capture a fraction of the entire trauma population and it tends to be the more severely ill patients. As a result, the administrative data was not able to accurately answer hospital or operating room utilization as well as specific information on diagnosis categories regarding trauma patients. APR-DRG administrative data should not be used as the only data source for evaluating the needs of a trauma program. Copyright © 2016 Elsevier Ltd. All rights reserved.

  12. EPA Facility Registry Service (FRS): ACRES

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of sites that link to...

  13. BioSWR – Semantic Web Services Registry for Bioinformatics

    Science.gov (United States)

    Repchevsky, Dmitry; Gelpi, Josep Ll.

    2014-01-01

    Despite of the variety of available Web services registries specially aimed at Life Sciences, their scope is usually restricted to a limited set of well-defined types of services. While dedicated registries are generally tied to a particular format, general-purpose ones are more adherent to standards and usually rely on Web Service Definition Language (WSDL). Although WSDL is quite flexible to support common Web services types, its lack of semantic expressiveness led to various initiatives to describe Web services via ontology languages. Nevertheless, WSDL 2.0 descriptions gained a standard representation based on Web Ontology Language (OWL). BioSWR is a novel Web services registry that provides standard Resource Description Framework (RDF) based Web services descriptions along with the traditional WSDL based ones. The registry provides Web-based interface for Web services registration, querying and annotation, and is also accessible programmatically via Representational State Transfer (REST) API or using a SPARQL Protocol and RDF Query Language. BioSWR server is located at http://inb.bsc.es/BioSWR/and its code is available at https://sourceforge.net/projects/bioswr/under the LGPL license. PMID:25233118

  14. The Global Registry of Biodiversity Repositories: A Call for Community Curation

    Science.gov (United States)

    Miller, Scott E.; Trizna, Michael G.; Graham, Eileen; Crane, Adele E.

    2016-01-01

    Abstract The Global Registry of Biodiversity Repositories is an online metadata resource for biodiversity collections, the institutions that contain them, and associated staff members. The registry provides contact and address information, characteristics of the institutions and collections using controlled vocabularies and free-text descripitons, links to related websites, unique identifiers for each institution and collection record, text fields for loan and use policies, and a variety of other descriptors. Each institution record includes an institutionCode that must be unique, and each collection record must have a collectionCode that is unique within that institution. The registry is populated with records imported from the largest similar registries and more can be harmonized and added. Doing so will require community input and curation and would produce a truly comprehensive and unifying information resource. PMID:27660523

  15. The Global Registry of Biodiversity Repositories: A Call for Community Curation.

    Science.gov (United States)

    Schindel, David E; Miller, Scott E; Trizna, Michael G; Graham, Eileen; Crane, Adele E

    2016-01-01

    The Global Registry of Biodiversity Repositories is an online metadata resource for biodiversity collections, the institutions that contain them, and associated staff members. The registry provides contact and address information, characteristics of the institutions and collections using controlled vocabularies and free-text descripitons, links to related websites, unique identifiers for each institution and collection record, text fields for loan and use policies, and a variety of other descriptors. Each institution record includes an institutionCode that must be unique, and each collection record must have a collectionCode that is unique within that institution. The registry is populated with records imported from the largest similar registries and more can be harmonized and added. Doing so will require community input and curation and would produce a truly comprehensive and unifying information resource.

  16. The Canadian Registry for Pulmonary Fibrosis: Design and Rationale of a National Pulmonary Fibrosis Registry

    Directory of Open Access Journals (Sweden)

    Christopher J. Ryerson

    2016-01-01

    Full Text Available Background. The relative rarity and diversity of fibrotic interstitial lung disease (ILD have made it challenging to study these diseases in single-centre cohorts. Here we describe formation of a multicentre Canadian registry that is needed to describe the outcomes of fibrotic ILD and to enable detailed healthcare utilization analyses that will be the cornerstone for future healthcare planning. Methods. The Canadian Registry for Pulmonary Fibrosis (CARE-PF is a prospective cohort anticipated to consist of at least 2,800 patients with fibrotic ILD. CARE-PF will be used to (1 describe the natural history of fibrotic ILD, specifically determining the incidence and outcomes of acute exacerbations of ILD subtypes and (2 determine the impact of ILD and acute exacerbations of ILD on health services use and healthcare costs in the Canadian population. Consecutive patients with fibrotic ILD will be recruited from five Canadian ILD centres over a period of five years. Patients will be followed up as clinically indicated and will complete standardized questionnaires at each clinic visit. Prespecified outcomes and health services use will be measured based on self-report and linkage to provincial health administrative databases. Conclusion. CARE-PF will be among the largest prospective multicentre ILD registries in the world, providing detailed data on the natural history of fibrotic ILD and the healthcare resources used by these patients. As the largest and most comprehensive cohort of Canadian ILD patients, CARE-PF establishes a network for future clinical research and early phase clinical trials and provides a platform for translational and basic science research.

  17. Influence of the Three Gorges Project on saltwater intrusion in the Yangtze River Estuary

    Science.gov (United States)

    An, Qiang; Wu, Yanqing; Taylor, Shauna; Zhao, Bin

    2009-02-01

    The Three Gorges Project (TGP) is a transcentury project that has aroused world attention. It is expected that the flow velocity and runoff of the Yangtze River will be changed after the project has been accomplished. Consequently, however, the ecological environment in the Yangtze River Basin, particularly in the estuary region, will be affected. Salinity intrusion into the Yangtze River estuary, in general, is mostly affected by the Yangtze River discharge and its external tidal level. This paper focuses on examining the influence of changes in runoff on salinity value. The question, to which should be paid attention is: how is the interaction between changes in runoff of the Yangtze River and salinity distribution in the Yangtze River estuary, China? In this research, a three-dimensional model has been used to identify the effects of runoff change on salinity distribution. The drawn conclusion is that the change of salinity is influenced by discharge variation. Positive and negative impacts of TGP would both turn up but in different period. In sum, TGP is in favor of restraining saltwater intrusion. Nevertheless a suitable method should be found to resolve its negative influences.

  18. The danish multiple sclerosis registry

    DEFF Research Database (Denmark)

    Brønnum-Hansen, Henrik; Koch-Henriksen, Nils; Stenager, Egon

    2011-01-01

    Introduction: The Danish Multiple Sclerosis (MS) Registry was established in 1956. Content: The register comprises data on all Danes who had MS in 1949 or who have been diagnosed since. Data on new cases and updated information on persons with an MS diagnosis already notified are continuously...

  19. Myositis registries and biorepositories: powerful tools to advance clinical, epidemiologic and pathogenic research.

    Science.gov (United States)

    Rider, Lisa G; Dankó, Katalin; Miller, Frederick W

    2014-11-01

    Clinical registries and biorepositories have proven extremely useful in many studies of diseases, especially rare diseases. Given their rarity and diversity, the idiopathic inflammatory myopathies, or myositis syndromes, have benefited from individual researchers' collections of cohorts of patients. Major efforts are being made to establish large registries and biorepositories that will allow many additional studies to be performed that were not possible before. Here, we describe the registries developed by investigators and patient support groups that are currently available for collaborative research purposes. We have identified 46 myositis research registries, including many with biorepositories, which have been developed for a wide variety of purposes and have resulted in great advances in understanding the range of phenotypes, clinical presentations, risk factors, pathogenic mechanisms, outcome assessment, therapeutic responses, and prognoses. These are now available for collaborative use to undertake additional studies. Two myositis patient registries have been developed for research, and myositis patient support groups maintain demographic registries with large numbers of patients available to be contacted for potential research participation. Investigator-initiated myositis research registries and biorepositories have proven extremely useful in understanding many aspects of these rare and diverse autoimmune diseases. These registries and biorepositories, in addition to those developed by myositis patient support groups, deserve continued support to maintain the momentum in this field as they offer major opportunities to improve understanding of the pathogenesis and treatment of these diseases in cost-effective ways.

  20. Development of the SIOPE DIPG network, registry and imaging repository

    DEFF Research Database (Denmark)

    Veldhuijzen van Zanten, Sophie E M; Baugh, Joshua; Chaney, Brooklyn

    2017-01-01

    was developed, The SIOPE DIPG Registry and Imaging Repository, to centrally collect data of DIPG patients. As for April 2016, clinical data as well as MR-scans of 694 patients have been entered into the SIOPE DIPG Registry/Imaging Repository. The median progression free survival is 6.0 months (95% Confidence...

  1. Enhancing requirements engineering for patient registry software systems with evidence-based components.

    Science.gov (United States)

    Lindoerfer, Doris; Mansmann, Ulrich

    2017-07-01

    Patient registries are instrumental for medical research. Often their structures are complex and their implementations use composite software systems to meet the wide spectrum of challenges. Commercial and open-source systems are available for registry implementation, but many research groups develop their own systems. Methodological approaches in the selection of software as well as the construction of proprietary systems are needed. We propose an evidence-based checklist, summarizing essential items for patient registry software systems (CIPROS), to accelerate the requirements engineering process. Requirements engineering activities for software systems follow traditional software requirements elicitation methods, general software requirements specification (SRS) templates, and standards. We performed a multistep procedure to develop a specific evidence-based CIPROS checklist: (1) A systematic literature review to build a comprehensive collection of technical concepts, (2) a qualitative content analysis to define a catalogue of relevant criteria, and (3) a checklist to construct a minimal appraisal standard. CIPROS is based on 64 publications and covers twelve sections with a total of 72 items. CIPROS also defines software requirements. Comparing CIPROS with traditional software requirements elicitation methods, SRS templates and standards show a broad consensus but differences in issues regarding registry-specific aspects. Using an evidence-based approach to requirements engineering for registry software adds aspects to the traditional methods and accelerates the software engineering process for registry software. The method we used to construct CIPROS serves as a potential template for creating evidence-based checklists in other fields. The CIPROS list supports developers in assessing requirements for existing systems and formulating requirements for their own systems, while strengthening the reporting of patient registry software system descriptions. It may be

  2. Reducing selection bias in case-control studies from rare disease registries

    Directory of Open Access Journals (Sweden)

    Mistry Pramod K

    2011-09-01

    Full Text Available Abstract Background In clinical research of rare diseases, where small patient numbers and disease heterogeneity limit study design options, registries are a valuable resource for demographic and outcome information. However, in contrast to prospective, randomized clinical trials, the observational design of registries is prone to introduce selection bias and negatively impact the validity of data analyses. The objective of the study was to demonstrate the utility of case-control matching and the risk-set method in order to control bias in data from a rare disease registry. Data from the International Collaborative Gaucher Group (ICGG Gaucher Registry were used as an example. Methods A case-control matching analysis using the risk-set method was conducted to identify two groups of patients with type 1 Gaucher disease in the ICGG Gaucher Registry: patients with avascular osteonecrosis (AVN and those without AVN. The frequency distributions of gender, decade of birth, treatment status, and splenectomy status were presented for cases and controls before and after matching. Odds ratios (and 95% confidence intervals were calculated for each variable before and after matching. Results The application of case-control matching methodology results in cohorts of cases (i.e., patients with AVN and controls (i.e., patients without AVN who have comparable distributions for four common parameters used in subject selection: gender, year of birth (age, treatment status, and splenectomy status. Matching resulted in odds ratios of approximately 1.00, indicating no bias. Conclusions We demonstrated bias in case-control selection in subjects from a prototype rare disease registry and used case-control matching to minimize this bias. Therefore, this approach appears useful to study cohorts of heterogeneous patients in rare disease registries.

  3. Analysis of Existing Guidelines for the Systematic Planning Process of Clinical Registries.

    Science.gov (United States)

    Löpprich, Martin; Knaup, Petra

    2016-01-01

    Clinical registries are a powerful method to observe the clinical practice and natural disease history. In contrast to clinical trials, where guidelines and standardized methods exist and are mandatory, only a few initiatives have published methodological guidelines for clinical registries. The objective of this paper was to review these guidelines and systematically assess their completeness, usability and feasibility according to a SWOT analysis. The results show that each guideline has its own strengths and weaknesses. While one supports the systematic planning process, the other discusses clinical registries in great detail. However, the feasibility was mostly limited and the special requirements of clinical registries, their flexible, expandable and adaptable technological structure was not addressed consistently.

  4. Rapid Development of Specialty Population Registries and Quality Measures from Electronic Health Record Data.

    Science.gov (United States)

    Kannan, Vaishnavi; Fish, Jason S; Mutz, Jacqueline M; Carrington, Angela R; Lai, Ki; Davis, Lisa S; Youngblood, Josh E; Rauschuber, Mark R; Flores, Kathryn A; Sara, Evan J; Bhat, Deepa G; Willett, DuWayne L

    2017-01-01

    Creation of a new electronic health record (EHR)-based registry often can be a "one-off" complex endeavor: first developing new EHR data collection and clinical decision support tools, followed by developing registry-specific data extractions from the EHR for analysis. Each development phase typically has its own long development and testing time, leading to a prolonged overall cycle time for delivering one functioning registry with companion reporting into production. The next registry request then starts from scratch. Such an approach will not scale to meet the emerging demand for specialty registries to support population health and value-based care. To determine if the creation of EHR-based specialty registries could be markedly accelerated by employing (a) a finite core set of EHR data collection principles and methods, (b) concurrent engineering of data extraction and data warehouse design using a common dimensional data model for all registries, and (c) agile development methods commonly employed in new product development. We adopted as guiding principles to (a) capture data as a byproduct of care of the patient, (b) reinforce optimal EHR use by clinicians, (c) employ a finite but robust set of EHR data capture tool types, and (d) leverage our existing technology toolkit. Registries were defined by a shared condition (recorded on the Problem List) or a shared exposure to a procedure (recorded on the Surgical History) or to a medication (recorded on the Medication List). Any EHR fields needed - either to determine registry membership or to calculate a registry-associated clinical quality measure (CQM) - were included in the enterprise data warehouse (EDW) shared dimensional data model. Extract-transform-load (ETL) code was written to pull data at defined "grains" from the EHR into the EDW model. All calculated CQM values were stored in a single Fact table in the EDW crossing all registries. Registry-specific dashboards were created in the EHR to display both

  5. Describing the first 2000 registrations to the Research Registry®: A study protocol

    Directory of Open Access Journals (Sweden)

    Alexander J. Fowler

    Full Text Available Background: In 2013, the Declaration of Helsinki was updated and required the registration of all research studies involving human participants. Prior registries focussed on the registration of clinical trials and systematic reviews, and we estimate that only 10% of observational research is registered in a publically accessible registry. The Research Registry® was established to provide a venue of registration for any study, prospectively or retrospectively, involving human participants. This protocol describes the analysis for the first 2000 registrations received to the Research Registry®. Methods and analysis: Data for each registration to the Research Registry® (www.researchregistry.com, adapted from the World Health Organisation minimum data set, has been collected since the launch of the registry in 2015. A weekly curation process ensures that inappropriate registrations, such as duplicate studies or those not involving human participants, are removed from the registry. We will present the characteristics of the first 2000 registrations and how they have changed overtime. A quality score will be calculated for each registration by two independent teams, and inter-rater reliability will be calculated. Funding sources of work registered will also be presented. This process will also be performed for the systematic review portion of the registry (‘The Review Registry’, which will be considered separately. Ethics and dissemination: Ethical approval is not required for this study as it involves no human participants. The findings will be presented at international conferences and published in a peer reviewed journal.

  6. [The user´s reporting from the national registry of catheter aortic valve implantations (Czech TAVI Registry): the possibilities of the analytical reports based on the database system TrialDB2].

    Science.gov (United States)

    Bláha, Milan; Kala, Petr; Klimeš, Daniel; Bernat, Ivo; Branny, Marian; Cervinka, Pavel; Horák, Jan; Kočka, Viktor; Mates, Martin; Němec, Petr; Pešl, Ladislav; Stípal, Roman; Sťásek, Josef; Zelízko, Michael

    2014-10-01

    Assessment of the treatment procedures and their results is increasingly important in current medicine. The emphasis is put on an effective use of the health technologies (HTA). Unlike randomised studies, which involve strictly selected groups of patients who meet inclusion and exclusion criterias, the multicentre clinical registries provide a real-life picture of the treatment safety and effectiveness. Well prepared registries involve both research database and a friendly user interface enabling collection of parametric and easily analyzable data. Although there are some technological aspects aiming to ensure a maximum quality of entered data, cooperation with the users and data managers is essential. Such a registry, otherwise meaningful, must provide answers to previously defined medical hypotheses. Regular feedback to users (so called benchmarking or reporting) is considered to be of key importance. The Czech TAVI Registry (CTR) is a good example of reaching all of the above defined criterias. This registry contains data of approximately 95 % of all transcatheter aortic valve implantations (TAVI) performed in the Czech Republic. It is based on a general system aimed at the design of clinical trials, namely the TrialDB2 (a database system for clinical registries developed by the Institute of Biostatistics and Analyses at the Masaryk University (IBA MU). CTR has been run as an English-language version under the auspices of the Czech Society of Cardiology and represents one of the top-quality registries maintained by IBA MU. This paper presents the currently available database systems and some reports from this particular registry.

  7. Missing data in trauma registries: A systematic review.

    Science.gov (United States)

    Shivasabesan, Gowri; Mitra, Biswadev; O'Reilly, Gerard M

    2018-03-30

    Trauma registries play an integral role in trauma systems but their valid use hinges on data quality. The aim of this study was to determine, among contemporary publications using trauma registry data, the level of reporting of data completeness and the methods used to deal with missing data. A systematic review was conducted of all trauma registry-based manuscripts published from 01 January 2015 to current date (17 March 2017). Studies were identified by searching MEDLINE, EMBASE, and CINAHL using relevant subject headings and keywords. Included manuscripts were evaluated based on previously published recommendations regarding the reporting and discussion of missing data. Manuscripts were graded on their degree of characterization of such observations. In addition, the methods used to manage missing data were examined. There were 539 manuscripts that met inclusion criteria. Among these, 208 (38.6%) manuscripts did not mention data completeness and 88 (16.3%) mentioned missing data but did not quantify the extent. Only a handful (n = 26; 4.8%) quantified the 'missingness' of all variables. Most articles (n = 477; 88.5%) contained no details such as a comparison between patient characteristics in cohorts with and without missing data. Of the 331 articles which made at least some mention of data completeness, the method of managing missing data was unknown in 34 (10.3%). When method(s) to handle missing data were identified, 234 (78.8%) manuscripts used complete case analysis only, 18 (6.1%) used multiple imputation only and 34 (11.4%) used a combination of these. Most manuscripts using trauma registry data did not quantify the extent of missing data for any variables and contained minimal discussion regarding missingness. Out of the studies which identified a method of managing missing data, most used complete case analysis, a method that may bias results. The lack of standardization in the reporting and management of missing data questions the validity of

  8. Enhancing cancer registry data for comparative effectiveness research (CER) project: overview and methodology.

    Science.gov (United States)

    Chen, Vivien W; Eheman, Christie R; Johnson, Christopher J; Hernandez, Monique N; Rousseau, David; Styles, Timothy S; West, Dee W; Hsieh, Meichin; Hakenewerth, Anne M; Celaya, Maria O; Rycroft, Randi K; Wike, Jennifer M; Pearson, Melissa; Brockhouse, Judy; Mulvihill, Linda G; Zhang, Kevin B

    2014-01-01

    Following the Institute of Medicine's 2009 report on the national priorities for comparative effectiveness research (CER), funding for support of CER became available in 2009 through the American Recovery and Re-investment Act. The Centers for Disease Control and Prevention (CDC) received funding to enhance the infrastructure of population-based cancer registries and to expand registry data collection to support CER. The CDC established 10 specialized registries within the National Program of Cancer Registries (NPCR) to enhance data collection for all cancers and to address targeted CER questions, including the clinical use and prognostic value of specific biomarkers. The project also included a special focus on detailed first course of treatment for cancers of the breast, colon, and rectum, as well as chronic myeloid leukemia (CML) diagnosed in 2011. This paper describes the methodology and the work conducted by the CDC and the NPCR specialized registries in collecting data for the 4 special focused cancers, including the selection of additional data variables, development of data collection tools and software modifications, institutional review board approvals, training, collection of detailed first course of treatment, and quality assurance. It also presents the characteristics of the study population and discusses the strengths and limitations of using population-based cancer registries to support CER as well as the potential future role of population-based cancer registries in assessing the quality of patient care and cancer control.

  9. Support for immunization registries among parents of vaccinated and unvaccinated school-aged children: a case control study

    Directory of Open Access Journals (Sweden)

    Pan William KY

    2006-09-01

    Full Text Available Abstract Background Immunizations have reduced childhood vaccine preventable disease incidence by 98–100%. Continued vaccine preventable disease control depends on high immunization coverage. Immunization registries help ensure high coverage by recording childhood immunizations administered, generating reminders when immunizations are due, calculating immunization coverage and identifying pockets needing immunization services, and improving vaccine safety by reducing over-immunization and providing data for post-licensure vaccine safety studies. Despite substantial resources directed towards registry development in the U.S., only 48% of children were enrolled in a registry in 2004. Parental attitudes likely impact child participation. Consequently, the purpose of this study was to assess the attitudes of parents of vaccinated and unvaccinated school-aged children regarding: support for immunization registries; laws authorizing registries and mandating provider reporting; opt-in versus opt-out registry participation; and financial worth and responsibility of registry development and implementation. Methods A case control study of parents of 815 children exempt from school vaccination requirements and 1630 fully vaccinated children was conducted. Children were recruited from 112 elementary schools in Colorado, Massachusetts, Missouri, and Washington. Surveys administered to the parents, asked about views on registries and perceived utility and safety of vaccines. Parental views were summarized and logistic regression models compared differences between parents of exempt and vaccinated children. Results Surveys were completed by 56.1% of respondents. Fewer than 10% of parents were aware of immunization registries in their communities. Among parents aware of registries, exempt children were more likely to be enrolled (65.0% than vaccinated children (26.5% (p value = 0.01. A substantial proportion of parents of exempt children support immunization

  10. Registry of Mineral and Petroleum Titles

    Energy Technology Data Exchange (ETDEWEB)

    Maclellan, I. M.; Kaizer, J. L.; McCulloch, P. D.; Ratcliffe, R.; Wenning, A. S. [Nova Scotia Dept. of Natural Resources, Halifax, NS (Canada)

    2000-07-01

    Activities of the Nova Scotia Registry of Mineral and Petroleum Titles are described, including statistical information about staking and mining activity in the province during 1999. In terms of activities, the Registry receives applications and issues licenses and leases for mineral and petroleum rights, receives statements of exploration expenditures and assessment reports that pertain to renewal of licenses and leases, maintains maps showing the disposition of lands under license or lease, and maintains a system of prospector registration. In addition, the Registry processes applications for underground gas storage rights and treasure trove rights and maintains a database of information concerning production and employment in Nova Scotia mines and quarries. At the end 1999 there were 230,660 hectares under exploration licence. Exploration expenditures, including engineering, economic and feasibility studies during 1999 totalled $4.2 million, mostly by junior mining companies searching for industrial mineral commodities. Mining activity during 1999 generated revenues of $340 million. Coal production dropped by 25 per cent, due mainly to the closure of the Phalen Mine. Gypsum production was up to 7.9 million tonnes; shipments of cement, barite and clay products also increased during 1999; salt production remained unchanged from 1998 with 842,000 tonnes. Production of construction aggregates totalled 10.6 million tonnes, down slightly from the year before. Mineral industry employment was roughly 2,500 persons, down by 24 per cent from 1998 levels, due primarily to the closure of the Phalen Mine.

  11. REAC/TS radiation accident registry. Update of accidents in the United States

    International Nuclear Information System (INIS)

    Ricks, R.C.; Berger, M.E.; Holloway, E.C.; Goans, R.E.

    2000-01-01

    Serious injury due to ionizing radiation is a rare occurrence. From 1944 to the present, 243 US accidents meeting dose criteria for classification as serious are documented in the REAC/TS Registry. Thirty individuals have lost their lives in radiation accidents in the United States. The Registry is part of the overall REAC/TS program providing 24-hour direct or consultative assistance regarding medical and heath physics problems associated with radiation accidents in local, national, and international incidents. The REAC/TS Registry serves as a repository of medically important information documenting the consequences of these accidents. Registry data are gathered from various sources. These include reports from the World Heath Organization (WHO), International Atomic Energy Agency (IAEA), US Nuclear Regulatory Commission (US NRC), state radiological health departments, medical/health physics literature, personal communication, the Internet, and most frequently, from calls for medical assistance to REAC/TS, as part of our 24-hour medical assistance program. The REAC/TS Registry for documentation of radiation accidents serves several useful purposes: 1) weaknesses in design, safety practices, training or control can be identified, and trends noted; 2) information regarding the medical consequences of injuries and the efficacy of treatment protocols is available to the treating physician; and 3) Registry case studies serve as valuable teaching tools. This presentation will review and summarize data on the US radiation accidents including their classification by device, accident circumstances, and frequency by respective states. Data regarding accidents with fatal outcomes will be reviewed. The inclusion of Registry data in the IAEA's International Reporting System of Radiation Events (RADEV) will also be discussed. (author)

  12. Analysis and visualization of disease courses in a semantically-enabled cancer registry.

    Science.gov (United States)

    Esteban-Gil, Angel; Fernández-Breis, Jesualdo Tomás; Boeker, Martin

    2017-09-29

    Regional and epidemiological cancer registries are important for cancer research and the quality management of cancer treatment. Many technological solutions are available to collect and analyse data for cancer registries nowadays. However, the lack of a well-defined common semantic model is a problem when user-defined analyses and data linking to external resources are required. The objectives of this study are: (1) design of a semantic model for local cancer registries; (2) development of a semantically-enabled cancer registry based on this model; and (3) semantic exploitation of the cancer registry for analysing and visualising disease courses. Our proposal is based on our previous results and experience working with semantic technologies. Data stored in a cancer registry database were transformed into RDF employing a process driven by OWL ontologies. The semantic representation of the data was then processed to extract semantic patient profiles, which were exploited by means of SPARQL queries to identify groups of similar patients and to analyse the disease timelines of patients. Based on the requirements analysis, we have produced a draft of an ontology that models the semantics of a local cancer registry in a pragmatic extensible way. We have implemented a Semantic Web platform that allows transforming and storing data from cancer registries in RDF. This platform also permits users to formulate incremental user-defined queries through a graphical user interface. The query results can be displayed in several customisable ways. The complex disease timelines of individual patients can be clearly represented. Different events, e.g. different therapies and disease courses, are presented according to their temporal and causal relations. The presented platform is an example of the parallel development of ontologies and applications that take advantage of semantic web technologies in the medical field. The semantic structure of the representation renders it easy to

  13. EPA Facility Registry Service (FRS): RCRA_INACTIVE

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of hazardous waste...

  14. EPA Facility Registry Service (FRS): RCRA_ACTIVE

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of active hazardous...

  15. EPA Linked Open Data: Facility Registry Service

    Data.gov (United States)

    U.S. Environmental Protection Agency — The Facility Registry Service (FRS) identifies facilities, sites, or places subject to environmental regulation or of environmental interest to EPA programs or...

  16. EPA Facility Registry Service (FRS): RCRA_TSD

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of Hazardous Waste...

  17. Forecasting Induced Seismicity Using Saltwater Disposal Data and a Hydromechanical Earthquake Nucleation Model

    Science.gov (United States)

    Norbeck, J. H.; Rubinstein, J. L.

    2017-12-01

    The earthquake activity in Oklahoma and Kansas that began in 2008 reflects the most widespread instance of induced seismicity observed to date. In this work, we demonstrate that the basement fault stressing conditions that drive seismicity rate evolution are related directly to the operational history of 958 saltwater disposal wells completed in the Arbuckle aquifer. We developed a fluid pressurization model based on the assumption that pressure changes are dominated by reservoir compressibility effects. Using injection well data, we established a detailed description of the temporal and spatial variability in stressing conditions over the 21.5-year period from January 1995 through June 2017. With this stressing history, we applied a numerical model based on rate-and-state friction theory to generate seismicity rate forecasts across a broad range of spatial scales. The model replicated the onset of seismicity, the timing of the peak seismicity rate, and the reduction in seismicity following decreased disposal activity. The behavior of the induced earthquake sequence was consistent with the prediction from rate-and-state theory that the system evolves toward a steady seismicity rate depending on the ratio between the current and background stressing rates. Seismicity rate transients occurred over characteristic timescales inversely proportional to stressing rate. We found that our hydromechanical earthquake rate model outperformed observational and empirical forecast models for one-year forecast durations over the period 2008 through 2016.

  18. CKD.QLD: establishment of a chronic kidney disease [CKD] registry in Queensland, Australia.

    Science.gov (United States)

    Venuthurupalli, Sree K; Hoy, Wendy E; Healy, Helen G; Cameron, Anne; Fassett, Robert G

    2017-06-07

    Chronic kidney disease [CKD] is recognised as a global public health problem. Until recently, the majority of information informing on CKD has been generated from renal registries reporting on patients with end-stage kidney disease [ESKD] and on renal replacement therapy [RRT]. There has been a paucity of information on pre-dialysis CKD cohorts, and many issues related to these poorly described populations are unresolved. To this end, international organizations have called for CKD surveillance systems across all countries. In Australia, we have responded by developing the Chronic Kidney Disease in Queensland [CKD.QLD] with three main platforms consisting of CKD Registry, clinical trials and development of biobank. This registry which is the core component of CKD surveillance was conceptualized specifically for the pre-dialysis population in the public health system in Queensland, Australia. Recruitment started in May 2011, and to date the Registry has evolved as one of the largest CKD cohorts in the world with recruitment close to 7000 patients. The Registry has had many outcomes, including being the nidus for Australia's first National Health and Medical Research Council [NHMRC] CKD Centre of Research Excellence [CKD.CRE]. The Registry, with its linkage to Queensland Health datasets, is reporting, and is expected to continue generating, significant information on multiple aspects of CKD, its trajectory, management and patient outcomes. Intent of the CKD.CRE is to facilitate an expanded Registry network that has representation from health services, both public and private, across Australia.

  19. A need for national registry of radiation workers

    International Nuclear Information System (INIS)

    Marathe, P.K.; Krishnan, D.; Massand, O.P.; Dhond, R.V.

    1988-01-01

    In India about 33000 radiation workers are monitored regularly from a centralised Personnel Monitoring Service conducted by the Division of Radiological Protection, B.A.R.C. In view of the large dose data accumulated over the past thirty years it is only logical to investigate for biological effects if any. The need to initiate National Registry of Radiation Workers (NRRW) is pointed out. Such a registry is in force in U.K., Canada, France and Japan etc. Even in case of negative findings, such an exercise would help in allaying fears among radiation workers in particular and the public in general. (author)

  20. EPA Facility Registry Service (FRS): ER_TRI

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  1. EPA Facility Registry Service (FRS): ER_TSCA

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  2. EPA Facility Registry Service (FRS): RCRA_LQG

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  3. EPA Facility Registry Service (FRS): AIRS_AFS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  4. EPA Facility Registry Service (FRS): RCRA_TRANS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  5. EPA Facility Registry Service (FRS): ER_RMP

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  6. EPA Facility Registry Service (FRS): ER_RCRATSD

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  7. EPA Facility Registry Service (FRS): ER_EPLAN

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  8. EPA Facility Registry Service (FRS): PCS_NPDES

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  9. EPA Facility Registry Service (FRS): ER_CERCLIS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  10. EPA Facility Registry Service (FRS): CERCLIS_NPL

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that are...

  11. EPA Linked Open Data: Substance Registry Service

    Data.gov (United States)

    U.S. Environmental Protection Agency — Substance Registry Services (SRS) is the Environmental Protection Agency's (EPA) central system for information about substances that are tracked or regulated by EPA...

  12. EPA Facility Registry Service (FRS): ER_FRP

    Data.gov (United States)

    U.S. Environmental Protection Agency — This dataset contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link to Facility...

  13. EPA Facility Registry Service (FRS): AIRS_AQS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  14. Promoting Organ Donor Registries Through Public Education: What Is the Cost of Securing Organ Donors?

    Science.gov (United States)

    Razdan, Manik; Smith, Kenneth J; Bryce, Cindy L; Degenholtz, Howard B

    2016-06-01

    Transplant medicine's impact on America's public health is seriously limited by acute shortage of transplantable organs. Consequently, the United Sates has witnessed considerable investment in the promotion of organ donor registries. Although there is no evidence to support that donor registry promotion alleviates organ shortage, this belief continues to drive investments into registry promotion. In this study, return on investment in donor registry promotion was examined using cost-outcomes analysis. Cost of promoting the donor registry was estimated in US dollars whereas the outcome was measured as the number of individuals who join the registry (registrants) and their value in terms of organ donors. The study was conducted from the perspective of a regional Organ Procurement Organization (OPO). Costs were directly obtained from the OPO. The number of new registrants was obtained from the OPO and the departments of motor vehicles that maintain the donor registry. The value of registrants in terms of organ donors was computed based on a registrant's age-dependent risk of dying and age-dependent probability of becoming an organ donor. Six thousand seven hundred eight individuals joined the organ donor registry (95% confidence interval [95% CI], 5429-7956) at a cost of $455 per registrant (95% CI, US $383-US $562). These individuals result in 4.2 present-day donors (95% CI, 2.5-6.6) at a cost of US $726 000 (95% CI, US $462000-US $1.2 million). Because the cost per registrant and cost per donor is less than society's willingness to pay, donor registry promotion offers positive return on investment. Investment in registry promotion should at the minimum be maintained at current levels.

  15. RSA and registries: the quest for phased introduction of new implants.

    Science.gov (United States)

    Nelissen, Rob G H H; Pijls, Bart G; Kärrholm, Johan; Malchau, Henrik; Nieuwenhuijse, Marc J; Valstar, Edward R

    2011-12-21

    Although the overall survival of knee and hip prostheses at ten years averages 90%, recent problems with several hip and knee prostheses have illustrated that the orthopaedic community, industry, and regulators can still further improve patient safety. Given the early predictive properties of roentgen stereophotogrammetric analysis (RSA) and the meticulous follow-up of national joint registries, these two methods are ideal tools for such a phased clinical introduction. In this paper, we elaborate on the predictive power of RSA within a two-year follow-up after arthroplasty and its relationship to national joint registries. The association between RSA prosthesis-migration data and registry data is evaluated. The five-year rate of revision of RSA-tested total knee replacements was compared with that of non-RSA-tested total knee replacements. Data were extracted from the published results of the national joint registries of Sweden, Australia, and New Zealand. There was a 22% to 35% reduction in the number of revisions of RSA-tested total knee replacements as compared with non-RSA-tested total knee replacements in the national joint registries. Assuming that the total cost of total knee arthroplasty is $37,000 in the United States, a 22% to 35% reduction in the number of revisions (currently close to 55,000 annually) could lead to an estimated annual savings of over $400 million to the health-care system. The phased clinical introduction of new prostheses with two-year RSA results as a qualitative tool could lead to better patient care and could reduce the costs associated with revision total knee arthroplasty. Follow-up in registries is necessary to substantiate these results and to improve post-market surveillance.

  16. The national dose registry of Canada

    International Nuclear Information System (INIS)

    1982-04-01

    In 1951, when the National Dosimetry Service was established by the Department of National Health and Welfare, a system of centralized records was created as an integral part of the new service. Over the last few years the dose record system has expanded in size and content, and improvements have been made in the physical methods of record storage. In addition to the 250 000 individual dose records from the National Dosimetry Service, the National Dose Registry now includes internal tritium and external doses from nuclear generating stations, and radon daughter exposures submitted by uranium mining companies. With the increase in the use of radiation in the medical, industrial and research fields, it is becoming more important to have a comprehensive and readily accessible centralized record system. The Canadian National Dose Registry is particularly suited for continuing health risk studies of radiation workers and provides a base for future epidemiological studies

  17. Agile Model Driven Development of Electronic Health Record-Based Specialty Population Registries

    Science.gov (United States)

    Kannan, Vaishnavi; Fish, Jason C.; Willett, DuWayne L.

    2018-01-01

    The transformation of the American healthcare payment system from fee-for-service to value-based care increasingly makes it valuable to develop patient registries for specialized populations, to better assess healthcare quality and costs. Recent widespread adoption of Electronic Health Records (EHRs) in the U.S. now makes possible construction of EHR-based specialty registry data collection tools and reports, previously unfeasible using manual chart abstraction. But the complexities of specialty registry EHR tools and measures, along with the variety of stakeholders involved, can result in misunderstood requirements and frequent product change requests, as users first experience the tools in their actual clinical workflows. Such requirements churn could easily stall progress in specialty registry rollout. Modeling a system’s requirements and solution design can be a powerful way to remove ambiguities, facilitate shared understanding, and help evolve a design to meet newly-discovered needs. “Agile Modeling” retains these values while avoiding excessive unused up-front modeling in favor of iterative incremental modeling. Using Agile Modeling principles and practices, in calendar year 2015 one institution developed 58 EHR-based specialty registries, with 111 new data collection tools, supporting 134 clinical process and outcome measures, and enrolling over 16,000 patients. The subset of UML and non-UML models found most consistently useful in designing, building, and iteratively evolving EHR-based specialty registries included User Stories, Domain Models, Use Case Diagrams, Decision Trees, Graphical User Interface Storyboards, Use Case text descriptions, and Solution Class Diagrams. PMID:29750222

  18. 76 FR 36896 - Notice of Establishment of a New Plant Protection and Quarantine Stakeholder Registry

    Science.gov (United States)

    2011-06-23

    ... Quarantine Stakeholder Registry AGENCY: Animal and Plant Health Inspection Service, USDA. ACTION: Notice.... FOR FURTHER INFORMATION CONTACT: For information on the PPQ Stakeholder Registry, contact Ms. Donna L... Quarantine (PPQ) stakeholder registry is an email subscription service that allows individuals to receive...

  19. The Danish National Acute Leukemia Registry

    DEFF Research Database (Denmark)

    Østgård, Lene Sofie Granfeldt; Nørgaard, Jan Maxwell; Raaschou-Jensen, Klas Kræsten

    2016-01-01

    years. To ensure this high coverage, completeness, and quality of data, linkage to the Danish Civil Registration System and the Danish National Registry of Patients, and several programmed data entry checks are used. CONCLUSION: The completeness and positive predictive values of the leukemia data have...

  20. 77 FR 22284 - Notice of Establishment of a Veterinary Services Stakeholder Registry

    Science.gov (United States)

    2012-04-13

    ... DEPARTMENT OF AGRICULTURE Animal and Plant Health Inspection Service [Docket No. APHIS-2012-0013] Notice of Establishment of a Veterinary Services Stakeholder Registry AGENCY: Animal and Plant Health... a Veterinary Services (VS) Stakeholder Registry, an email subscription service for individuals and...

  1. Substance Identification Information from EPA's Substance Registry

    Data.gov (United States)

    U.S. Environmental Protection Agency — The Substance Registry Services (SRS) is the authoritative resource for basic information about substances of interest to the U.S. EPA and its state and tribal...

  2. Evidence and practice in spine registries A systematic review, and recommendations for future design of registries

    NARCIS (Netherlands)

    van Hooff, M.L.; Jacobs, W.C.H.; Willems, P.C.; Wouters, M.W.J.M.; de Kleuver, M.; Peul, W.C.; Ostelo, R.W.J.G.; Fritzell, P.

    2015-01-01

    Background and purpose-We performed a systematic review and a survey in order to (1) evaluate the evidence for the impact of spine registries on the quality of spine care, and with that, on patient-related outcomes, and (2) evaluate the methodology used to organize, analyze, and report the "quality

  3. RHEUMATOID ARTHRITIS IN THE RUSSIAN FEDERATION ACCORDING TO RUSSIAN ARTHRITIS REGISTRY DATA (COMMUNICATION I

    Directory of Open Access Journals (Sweden)

    E. L. Nasonov

    2016-01-01

    Full Text Available The paper presents the materials of the Russian Arthritis Registry (OREL that includes 3276 patients from 11 Russian Federation's largest research-and-practical centers situated in Moscow, Saint Petersburg, Novosibirsk, Kazan, Tula, Yaroslavl, Tyumen. It discusses the main goals of setting up registries, compares the results of an analysis of the data available in the Russian Registry OREL and registries of European countries and the USA. The findings suggest that there is non-uniform information on clinical, laboratory, and instrumental parameters in the national registers of a number of European countries and the USA. According to its basic characteristics, the Russian Registry OREL compares favorably with a number of other registries in the completeness of data collection, which allows a general idea of rheumatoidarthritis (RA patients in Russia. For further development of the OREL Registry, it is necessary to concentrate our attention on the following main areas: to improve the quality of filling out documents; to follow-up patients receiving different RA therapy regimens according to the guidelines of the Association of Rheumatologists of Russia for the treatment of RA; to conduct in-depth studies of comorbidity, primarily depressive disorders; to analyze adverse reactions that make RA therapy difficult; to actively use modules for patients' self-rating of their condition; to develop nursing care, etc.

  4. Time Trends in Breast Cancer Among Indian Women Population: An Analysis of Population Based Cancer Registry Data.

    Science.gov (United States)

    Chaturvedi, Meesha; Vaitheeswaran, K; Satishkumar, K; Das, Priyanka; Stephen, S; Nandakumar, A

    2015-12-01

    The trends observed in cancer breast among Indian women are an indication of effect of changing lifestyle in population. To draw an appropriate inference regarding the trends of a particular type of cancer in a country, it is imperative to glance at the reliable data collected by Population Based Cancer Registries over a period of time. To give an insight of changing trends of breast cancer which have taken place over a period of time among women in Cancer Registries of India. Breast Cancer trends for invasive breast cancer in women in Indian Registries have varied during the selected period. Occurrence of breast cancers has also shown geographical variation in India. This data was collected by means of a 'Standard Core Proforma' designed by NCRP conforming to the data fields as suggested by International norms. The Proforma was filled by trained Registry workers based on interview/ hospital medical records/ supplementing data by inputs from treating surgeons/radiation oncologists/involved physicians/pathologists. The contents of the Proforma are entered into specifically created software and transmitted electronically to the coordinating center at Bangalore. The registries contributing to more number of years of data are called as older registries, while other recently established registries are called newer registries. While there has been an increase recorded in breast cancer in most of the registries, some of them have recorded an insignificant increase. Comparison of Age Adjusted Rates (AARs) among Indian Registries has been carried out after which trends observed in populations covered by Indian Registries are depicted. A variation in broad age groups of females and the proneness of females developing breast cancer over the period 1982 to 2010 has been shown. Comparisons of Indian registries with International counterparts have also been carried out. There are marked changes in incidence rates of cancer breast which have occurred in respective registries in a

  5. Upgraded national occupational dose registry system - implementation of Phase-II programme

    International Nuclear Information System (INIS)

    Sanaye, S.S.; Baburajan, Sujatha; Johnson, Seethal; Nalawade, S.K.; Tudu, S.C.; Khedekar, B.M.; Sapra, B.K.; Datta, D.

    2016-01-01

    National Occupational Dose Registry System (NODRS) of Bhabha Atomic Research Centre maintains and updates occupational dose data of all monitored radiation workers in the country. The registry was upgraded in 2008 by establishing networked NODRS system through which personnel monitoring labs at different nuclear installations were networked with main dose registry server using the departmental ANUNET and NPCNET facilities. This has facilitated online allotment of personal numbers, storing of biometric information as well as providing online dose information to respective Health Physics Units (HPUs). On the basis of operational experience of NODRS and its feedback from users, Phase-II program was designed, developed and implemented. The paper gives an overview of implementation of this program at various sites

  6. Costing Tool for International Cancer Registries

    Centers for Disease Control (CDC) Podcasts

    2016-11-21

    A health economist at CDC talks about a new tool for estimating how much it costs to run cancer registries in developing countries.  Created: 11/21/2016 by National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP).   Date Released: 11/21/2016.

  7. A direct biocombinatorial strategy toward next generation, mussel-glue inspired saltwater adhesives.

    Science.gov (United States)

    Wilke, Patrick; Helfricht, Nicolas; Mark, Andreas; Papastavrou, Georg; Faivre, Damien; Börner, Hans G

    2014-09-10

    Biological materials exhibit remarkable, purpose-adapted properties that provide a source of inspiration for designing new materials to meet the requirements of future applications. For instance, marine mussels are able to attach to a broad spectrum of hard surfaces under hostile conditions. Controlling wet-adhesion of synthetic macromolecules by analogue processes promises to strongly impact materials sciences by offering advanced coatings, adhesives, and glues. The de novo design of macromolecules to mimic complex aspects of mussel adhesion still constitutes a challenge. Phage display allows material scientists to design specifically interacting molecules with tailored affinity to material surfaces. Here, we report on the integration of enzymatic processing steps into phage display biopanning to expand the biocombinatorial procedure and enable the direct selection of enzymatically activable peptide adhesion domains. Adsorption isotherms and single molecule force spectroscopy show that those de novo peptides mimic complex aspects of bioadhesion, such as enzymatic activation (by tyrosinase), the switchability from weak to strong binders, and adsorption under hostile saltwater conditions. Furthermore, peptide-poly(ethylene oxide) conjugates are synthesized to generate protective coatings, which possess anti-fouling properties and suppress irreversible interactions with blood-plasma protein cocktails. The extended phage display procedure provides a generic way to non-natural peptide adhesion domains, which not only mimic nature but also improve biological sequence sections extractable from mussel-glue proteins. The de novo peptides manage to combine several tasks in a minimal 12-mer sequence and thus pave the way to overcome major challenges of technical wet glues.

  8. Implementation and Analysis of Initial Trauma Registry in Iquitos, Peru

    Directory of Open Access Journals (Sweden)

    Vincent Duron

    2016-10-01

    Full Text Available Background: In Peru, 11% of deaths are due to trauma. Iquitos is a large underserved Peruvian city isolated from central resources by its geography. Our objective was to implement a locally driven trauma registry to sustainably improve trauma healthcare in this region. Methods: All trauma patients presenting to the main regional referral hospital were included in the trauma registry. A pilot study retrospectively analyzed data from the first two months after implementation. Results: From March to April 2013, 572 trauma patients were entered into the database. Average age was 26.9 years. Ten percent of patients presented more than 24 hours after injury. Most common mechanisms of injury were falls (25.5%, motor vehicle collisions (23.3%, and blunt assault (10.5%. Interim analysis revealed that 99% of patients were entered into the database. However, documentation of vital signs was poor: 42% of patients had temperature, 26% had oxygen saturation documented. After reporting to registry staff, a significant increase in temperature (42 to 97%, P < 0.001 and oxygen saturation (26 to 92%, P < 0.001 documentation was observed. Conclusion: A trauma registry is possible to implement in a resource-poor setting. Future efforts will focus on analysis of data to enhance prevention and treatment of injuries in Iquitos.

  9. Oral cancer in Libya and development of regional oral cancer registries: A review.

    Science.gov (United States)

    BenNasir, E; El Mistiri, M; McGowan, R; Katz, R V

    2015-10-01

    The aims of this paper are three-fold: (1) to summarize the current epidemiological data on oral cancer in Libya as reported in the published literature and as compared to other national oral cancer rates in the region; (2) to present both the history of the early development, and future goals, of population-based oral cancer tumor registries in Libya as they partner with the more established regional and international population-based cancer tumor registries; and, (3) to offer recommendations that will likely be required in the near future if these nascent, population-based Libyan oral cancer registries are to establish themselves as on-going registries for describing the oral cancer disease patterns and risk factors in Libya as well as for prevention and treatment. This comprehensive literature review revealed that the current baseline incidence of oral cancer in Libya is similar to those of other North Africa countries and China, but is relatively low compared to the United Kingdom, the United States, and India. The recently established Libyan National Cancer Registry Program, initiated in 2007, while envisioning five cooperating regional cancer registries, continues to operate at a relatively suboptimal level. Lack of adequate levels of national funding continue to plague its development…and the accompanying quality of service that could be provided to the Libyan people.

  10. Tools and data services registry: a community effort to document bioinformatics resources

    Science.gov (United States)

    Ison, Jon; Rapacki, Kristoffer; Ménager, Hervé; Kalaš, Matúš; Rydza, Emil; Chmura, Piotr; Anthon, Christian; Beard, Niall; Berka, Karel; Bolser, Dan; Booth, Tim; Bretaudeau, Anthony; Brezovsky, Jan; Casadio, Rita; Cesareni, Gianni; Coppens, Frederik; Cornell, Michael; Cuccuru, Gianmauro; Davidsen, Kristian; Vedova, Gianluca Della; Dogan, Tunca; Doppelt-Azeroual, Olivia; Emery, Laura; Gasteiger, Elisabeth; Gatter, Thomas; Goldberg, Tatyana; Grosjean, Marie; Grüning, Björn; Helmer-Citterich, Manuela; Ienasescu, Hans; Ioannidis, Vassilios; Jespersen, Martin Closter; Jimenez, Rafael; Juty, Nick; Juvan, Peter; Koch, Maximilian; Laibe, Camille; Li, Jing-Woei; Licata, Luana; Mareuil, Fabien; Mičetić, Ivan; Friborg, Rune Møllegaard; Moretti, Sebastien; Morris, Chris; Möller, Steffen; Nenadic, Aleksandra; Peterson, Hedi; Profiti, Giuseppe; Rice, Peter; Romano, Paolo; Roncaglia, Paola; Saidi, Rabie; Schafferhans, Andrea; Schwämmle, Veit; Smith, Callum; Sperotto, Maria Maddalena; Stockinger, Heinz; Vařeková, Radka Svobodová; Tosatto, Silvio C.E.; de la Torre, Victor; Uva, Paolo; Via, Allegra; Yachdav, Guy; Zambelli, Federico; Vriend, Gert; Rost, Burkhard; Parkinson, Helen; Løngreen, Peter; Brunak, Søren

    2016-01-01

    Life sciences are yielding huge data sets that underpin scientific discoveries fundamental to improvement in human health, agriculture and the environment. In support of these discoveries, a plethora of databases and tools are deployed, in technically complex and diverse implementations, across a spectrum of scientific disciplines. The corpus of documentation of these resources is fragmented across the Web, with much redundancy, and has lacked a common standard of information. The outcome is that scientists must often struggle to find, understand, compare and use the best resources for the task at hand. Here we present a community-driven curation effort, supported by ELIXIR—the European infrastructure for biological information—that aspires to a comprehensive and consistent registry of information about bioinformatics resources. The sustainable upkeep of this Tools and Data Services Registry is assured by a curation effort driven by and tailored to local needs, and shared amongst a network of engaged partners. As of November 2015, the registry includes 1785 resources, with depositions from 126 individual registrations including 52 institutional providers and 74 individuals. With community support, the registry can become a standard for dissemination of information about bioinformatics resources: we welcome everyone to join us in this common endeavour. The registry is freely available at https://bio.tools. PMID:26538599

  11. Linking Medicare, Medicaid, and Cancer Registry Data...

    Data.gov (United States)

    U.S. Department of Health & Human Services — Linking Medicare, Medicaid, and Cancer Registry Data to Study the Burden of Cancers in West Virginia In the United States, the elderly carry an unequal burden of...

  12. Improving Diabetes Outcomes Using a Web-Based Registry and Interactive Education: A Multisite Collaborative Approach

    Science.gov (United States)

    Morrow, Robert W.; Fletcher, Jason; Kelly, Kim F.; Shea, Laura A.; Spence, Maureen M.; Sullivan, Janet N.; Cerniglia, Joan R.; Yang, YoonJung

    2013-01-01

    Introduction: To support the adoption of guideline concordant care by primary care practices, the New York Diabetes Coalition (NYDC) promoted use of an electronic diabetes registry and developed an interactive educational module on using the registry and improving patient communication. The NYDC hypothesized that use of a registry with immediate…

  13. INSIST-ED: Italian Society of Andrology registry on penile prosthesis surgery. First data analysis

    Directory of Open Access Journals (Sweden)

    Edoardo Pescatori

    2016-07-01

    Full Text Available Objectives: The Italian Society of Andrology, i.e. “Società Italiana di Andrologia” (S.I.A., launched on December 2014 a prospective, multicenter, monitored and internal review board approved Registry for penile implants, the “INSIST-ED” (Italian Nationwide Systematic Inventarisation of Surgical Treatment for ED Registry. Purpose of this first report is to present a baseline data analysis of the characteristics of penile implant surgery in Italy. Material and methods: The INSIST-ED Registry is open to all surgeons implanting penile prostheses (all brands, all models in Italy, providing anonymous patient, device, surgical procedure, outcome, follow-up data, for both first and revision surgeries. A Registry project Board overviews all the steps of the project, and a Registry Monitor interacts with the Registry implanting surgeons. Results: As by April 8, 2016, 31 implanting surgeons actively joined the Registry, entering 367 surgical procedures in its database, that comprise: 310 first implants, 43 prosthesis substitutions, 14 device explants without substitution. Implanted devices account for: 288 three-component devices (81,3%, 20 two-component devices (5,4%, 45 non-hydraulic devices (12,3%. Leading primary ED etiologies in first implant surgeries resulted: former radical pelvic surgery in 111 cases (35,8%, Peyronie’s disease in 66 cases (21,3%, diabetes in 39 cases (12,6%. Two intraoperative complications have been recorded. Main reasons for 57 revision surgeries were: device failure (52,6%, erosion (19,3%, infection (12,3%, patient dissatisfaction (10,5%. Surgical settings for patients undergoing a first penile implant were: public hospitals in 251 cases (81%, private environments in 59 cases (19%. Conclusions: The INSIST-ED Registry represents the first European experience of penile prosthesis Registry. This baseline data analysis shows that: three-pieces inflatable prosthesis is the most implanted device, leading etiology of

  14. High Mortality without ESCAPE: The Registry of Heart Failure Patients Receiving Pulmonary Artery Catheters without Randomization

    Science.gov (United States)

    Allen, Larry A.; Rogers, Joseph G.; Warnica, J. Wayne; DiSalvo, Thomas G.; Tasissa, Gudaye; Binanay, Cynthia; O’Connor, Christopher M.; Califf, Robert M.; Leier, Carl V.; Shah, Monica R.; Stevenson, Lynne W.

    2008-01-01

    Background In ESCAPE, there was no difference in days alive and out of the hospital for patients with decompensated heart failure (HF) randomly assigned to therapy guided by pulmonary artery catheter (PAC) plus clinical assessment versus clinical assessment alone. The external validity of these findings is debated. Methods and Results ESCAPE sites enrolled 439 patients receiving PAC without randomization in a prospective registry. Baseline characteristics, pertinent trial exclusion criteria, reasons for PAC use, hemodynamics, and complications were collected. Survival was determined from the National Death Index and the Alberta Registry. On average, registry patients had lower blood pressure, worse renal function, less neurohormonal antagonist therapy, and higher use of intravenous inotropes as compared with trial patients. Although clinical assessment anticipated less volume overload and greater hypoperfusion among the registry population, measured filling pressures were similarly elevated in the registry and trial, while measured perfusion was slightly higher among registry patients. Registry patients had longer hospitalization (13 vs. 6 days, p <0.001) and higher 6-month mortality (34% vs. 20%, p < 0.001) than trial patients. Conclusions The decision to use PAC without randomization identified a population with higher disease severity and risk of mortality. This prospective registry highlights the complex context of patient selection for randomized trials. PMID:18926438

  15. Classification of Topographical Pattern of Spasticity in Cerebral Palsy: A Registry Perspective

    Science.gov (United States)

    Reid, Susan M.; Carlin, John B.; Reddihough, Dinah S.

    2011-01-01

    This study used data from a population-based cerebral palsy (CP) registry and systematic review to assess the amount of heterogeneity between registries in topographical patterns when dichotomised into unilateral (USCP) and bilateral spastic CP (BSCP), and whether the terms diplegia and quadriplegia provide useful additional epidemiological…

  16. Expression Profiles of Branchial FXYD Proteins in the Brackish Medaka Oryzias dancena: A Potential Saltwater Fish Model for Studies of Osmoregulation

    Science.gov (United States)

    Yang, Wen-Kai; Kang, Chao-Kai; Chang, Chia-Hao; Hsu, An-Di; Lee, Tsung-Han; Hwang, Pung-Pung

    2013-01-01

    FXYD proteins are novel regulators of Na+-K+-ATPase (NKA). In fish subjected to salinity challenges, NKA activity in osmoregulatory organs (e.g., gills) is a primary driving force for the many ion transport systems that act in concert to maintain a stable internal environment. Although teleostean FXYD proteins have been identified and investigated, previous studies focused on only a limited group of species. The purposes of the present study were to establish the brackish medaka (Oryzias dancena) as a potential saltwater fish model for osmoregulatory studies and to investigate the diversity of teleostean FXYD expression profiles by comparing two closely related euryhaline model teleosts, brackish medaka and Japanese medaka (O. latipes), upon exposure to salinity changes. Seven members of the FXYD protein family were identified in each medaka species, and the expression of most branchial fxyd genes was salinity-dependent. Among the cloned genes, fxyd11 was expressed specifically in the gills and at a significantly higher level than the other fxyd genes. In the brackish medaka, branchial fxyd11 expression was localized to the NKA-immunoreactive cells in gill epithelia. Furthermore, the FXYD11 protein interacted with the NKA α-subunit and was expressed at a higher level in freshwater-acclimated individuals relative to fish in other salinity groups. The protein sequences and tissue distributions of the FXYD proteins were very similar between the two medaka species, but different expression profiles were observed upon salinity challenge for most branchial fxyd genes. Salinity changes produced different effects on the FXYD11 and NKA α-subunit expression patterns in the gills of the brackish medaka. To our knowledge, this report is the first to focus on FXYD expression in the gills of closely related euryhaline teleosts. Given the advantages conferred by the well-developed Japanese medaka system, we propose the brackish medaka as a saltwater fish model for

  17. Current variables, definitions and endpoints of the European Cardiovascular Magnetic Resonance Registry

    Directory of Open Access Journals (Sweden)

    Schwitter Juerg

    2009-11-01

    Full Text Available Abstract Background Cardiovascular Magnetic Resonance (CMR is increasingly used in daily clinical practice. However, little is known about its clinical utility such as image quality, safety and impact on patient management. In addition, there is limited information about the potential of CMR to acquire prognostic information. Methods The European Cardiovascular Magnetic Resonance Registry (EuroCMR Registry will consist of two parts: 1 Multicenter registry with consecutive enrolment of patients scanned in all participating European CMR centres using web based online case record forms. 2 Prospective clinical follow up of patients with suspected coronary artery disease (CAD and hypertrophic cardiomyopathy (HCM every 12 months after enrolment to assess prognostic data. Conclusion The EuroCMR Registry offers an opportunity to provide information about the clinical utility of routine CMR in a large number of cases and a diverse population. Furthermore it has the potential to gather information about the prognostic value of CMR in specific patient populations.

  18. 77 FR 69548 - Proposed Information Collection (Agent Orange Registry Code Sheet); Comment Request

    Science.gov (United States)

    2012-11-19

    ... information contained in AOR to be able to notify Vietnam era veterans who served in the Republic of Vietnam... Gulf War Veterans Health Registry. Registry examination is provided to veterans who served in Korea in...

  19. Limitations of drug registries to evaluate orphan medicinal products for the treatment of lysosomal storage disorders

    NARCIS (Netherlands)

    Hollak, Carla E. M.; Aerts, Johannes M. F. G.; Aymé, Ségolène; Manuel, Jeremy

    2011-01-01

    Orphan drugs are often approved under exceptional circumstances, requiring submission of additional data on safety and effectiveness through registries. These registries are mainly focused on one drug only and data is frequently incomplete. Some registries also address phenotypic heterogeneity and

  20. Melanoma of the Skin in the Danish Cancer Registry and the Danish Melanoma Database: A Validation Study.

    Science.gov (United States)

    Pedersen, Sidsel Arnspang; Schmidt, Sigrun Alba Johannesdottir; Klausen, Siri; Pottegård, Anton; Friis, Søren; Hölmich, Lisbet Rosenkrantz; Gaist, David

    2018-05-01

    The nationwide Danish Cancer Registry and the Danish Melanoma Database both record data on melanoma for purposes of monitoring, quality assurance, and research. However, the data quality of the Cancer Registry and the Melanoma Database has not been formally evaluated. We estimated the positive predictive value (PPV) of melanoma diagnosis for random samples of 200 patients from the Cancer Registry (n = 200) and the Melanoma Database (n = 200) during 2004-2014, using the Danish Pathology Registry as "gold standard" reference. We further validated tumor characteristics in the Cancer Registry and the Melanoma Database. Additionally, we estimated the PPV of in situ melanoma diagnoses in the Melanoma Database, and the sensitivity of melanoma diagnoses in 2004-2014. The PPVs of melanoma in the Cancer Registry and the Melanoma Database were 97% (95% CI = 94, 99) and 100%. The sensitivity was 90% in the Cancer Registry and 77% in the Melanoma Database. The PPV of in situ melanomas in the Melanoma Database was 97% and the sensitivity was 56%. In the Melanoma Database, we observed PPVs of ulceration of 75% and Breslow thickness of 96%. The PPV of histologic subtypes varied between 87% and 100% in the Cancer Registry and 93% and 100% in the Melanoma Database. The PPVs for anatomical localization were 83%-95% in the Cancer Registry and 93%-100% in the Melanoma Database. The data quality in both the Cancer Registry and the Melanoma Database is high, supporting their use in epidemiologic studies.

  1. 50 CFR 600.1410 - Registry process.

    Science.gov (United States)

    2010-10-01

    ... United States § 600.1410 Registry process. (a) A person may register through the NMFS web site at www... state registration or U.S. Coast Guard documentation number; home port or principal area of operation... website. (b) Individuals must submit their name; address; telephone number; date of birth; region(s) of...

  2. Statewide Quality Improvement Initiative to Reduce Early Elective Deliveries and Improve Birth Registry Accuracy.

    Science.gov (United States)

    Kaplan, Heather C; King, Eileen; White, Beth E; Ford, Susan E; Fuller, Sandra; Krew, Michael A; Marcotte, Michael P; Iams, Jay D; Bailit, Jennifer L; Bouchard, Jo M; Friar, Kelly; Lannon, Carole M

    2018-04-01

    To evaluate the success of a quality improvement initiative to reduce early elective deliveries at less than 39 weeks of gestation and improve birth registry data accuracy rapidly and at scale in Ohio. Between February 2013 and March 2014, participating hospitals were involved in a quality improvement initiative to reduce early elective deliveries at less than 39 weeks of gestation and improve birth registry data. This initiative was designed as a learning collaborative model (group webinars and a single face-to-face meeting) and included individual quality improvement coaching. It was implemented using a stepped wedge design with hospitals divided into three balanced groups (waves) participating in the initiative sequentially. Birth registry data were used to assess hospital rates of nonmedically indicated inductions at less than 39 weeks of gestation. Comparisons were made between groups participating and those not participating in the initiative at two time points. To measure birth registry accuracy, hospitals conducted monthly audits comparing birth registry data with the medical record. Associations were assessed using generalized linear repeated measures models accounting for time effects. Seventy of 72 (97%) eligible hospitals participated. Based on birth registry data, nonmedically indicated inductions at less than 39 weeks of gestation declined in all groups with implementation (wave 1: 6.2-3.2%, Pinitiative, they saw significant decreases in rates of early elective deliveries as compared with wave 3 (control; P=.018). All waves had significant improvement in birth registry accuracy (wave 1: 80-90%, P=.017; wave 2: 80-100%, P=.002; wave 3: 75-100%, Pinitiative enabled statewide spread of change strategies to decrease early elective deliveries and improve birth registry accuracy over 14 months and could be used for rapid dissemination of other evidence-based obstetric care practices across states or hospital systems.

  3. Renal replacement therapy registries--time for a structured data quality evaluation programme

    NARCIS (Netherlands)

    Couchoud, Cécile; Lassalle, Mathilde; Cornet, Ronald; Jager, Kitty J.

    2013-01-01

    Registries in the area of renal replacement therapy (RRT) are intended to be a tool for epidemiological research, health care planning and improvement of quality of care. In this perspective, the value of a population-based RRT registry and its ability to achieve its goals rely heavily on the

  4. The Nanomaterial Registry: facilitating the sharing and analysis of data in the diverse nanomaterial community

    Directory of Open Access Journals (Sweden)

    Ostraat ML

    2013-09-01

    Full Text Available Michele L Ostraat, Karmann C Mills, Kimberly A Guzan, Damaris MurryRTI International, Durham, NC, USAAbstract: The amount of data being generated in the nanotechnology research space is significant, and the coordination, sharing, and downstream analysis of the data is complex and consistently deliberated. The complexities of the data are due in large part to the inherently complicated characteristics of nanomaterials. Also, testing protocols and assays used for nanomaterials are diverse and lacking standardization. The Nanomaterial Registry has been developed to address such challenges as the need for standard methods, data formatting, and controlled vocabularies for data sharing. The Registry is an authoritative, web-based tool whose purpose is to simplify the community's level of effort in assessing nanomaterial data from environmental and biological interaction studies. Because the registry is meant to be an authoritative resource, all data-driven content is systematically archived and reviewed by subject-matter experts. To support and advance nanomaterial research, a set of minimal information about nanomaterials (MIAN has been developed and is foundational to the Registry data model. The MIAN has been used to create evaluation and similarity criteria for nanomaterials that are curated into the Registry. The Registry is a publicly available resource that is being built through collaborations with many stakeholder groups in the nanotechnology community, including industry, regulatory, government, and academia. Features of the Registry website (https://www.nanomaterialregistry.org/ currently include search, browse, side-by-side comparison of nanomaterials, compliance ratings based on the quality and quantity of data, and the ability to search for similar nanomaterials within the Registry. This paper is a modification and extension of a proceedings paper for the Institute of Electrical and Electronics Engineers.Keywords: nanoinformatics

  5. Developing a provisional and national renal disease registry for Iran

    Directory of Open Access Journals (Sweden)

    Sima Ajami

    2015-01-01

    Full Text Available Background: Disease registry is a database that includes information about people suffering a special kind of disease. The aim of this study was to first identify and compare the National Renal Disease Registry (NRDR characteristics in some countries with Iran; and second, develop a provisional and NRDR for Iran. Materials and Methods: Retrieval of data of the NRDR was performed by scholars responsible in related agencies, including the Ministry of Health and Medical Education, Renal Disease charity, and data registries in the United States, United Kingdom, Malaysia, and Iran. This research was applied, and the study was descriptive-comparative. The study population consisted of the NRDR in selected countries in which data were collected by forms that were designed according to the study objectives. Sources of data were researchers, articles, books, journals, databases, websites, related documents, and people who are active in this regard, and related agencies, including the Ministry of Health and Medical Education, and patient support charity. The researchers collected data for each country based on the study objectives and then put them in comparative tables. Data were analyzed by descriptive, comparative, and theoretical methods. Results: Most of the renal transplant teams report their own results as a single center experiences. America and Britain have a preeminent national registry of renal disease compared to other countries. Conclusion: Given that control, prevention, and treatment of chronic renal diseases incur high expenses and the disease is one of leading mortality factors in Iran and across the world and since national registry system for chronic renal diseases can provide better tools and strategies to manage and evaluate patients′ characteristics as well as risk factors which eventually leads to making better decisions.

  6. Biogeochemical cycling of carbon, nitrogen, and phosphorus in saltwater marshes of Lavaca Bay, Texas. Final report

    Energy Technology Data Exchange (ETDEWEB)

    Armstrong, N.E.; Hinson, M.O. Jr.; Collins, J.H.; Fruh, E.G.

    1975-01-24

    Both laboratory and field tests were conducted. Special sediment slurry uptake studies were performed for the purpose of developing Freundlich-like isotherms relating sediment concentrations of C, N, P to the equilibrium concentrations in water and to show the effects of sediment composition, salinity, and temperature on uptake. The flux of N and P into and out of sediment were studied in fixed-bed systems by continuously adding various amounts of N and P to these systems and following uptake in the sediments until equilibrium conditions were established, then stopping the additions and following the release of nutrients from the sediments. Mass balances were made for C, N, and P added in spiked and non-spiked Bay water, and productivity measurements were taken to determine the stimulatory effects of these nutrient additions. The field studies involved the collection of hydraulic and nutrient data at several stations in a bayou off Swan Lake in Lavaca Bay to determine net nutrient transport and exchange from and in the saltwater marshes. Mathematical models describing the sediment uptake of C, N, and P as a function of the mass transfer coefficient and the difference between equilibrium and ambient nutrient concentrations were developed.

  7. [Monitoring of pregnancies exposed to drugs in France: the experience of the registries of congenital malformations].

    Science.gov (United States)

    Doray, Bérénice

    2014-01-01

    Registries of congenital malformations were implemented in many industrialized countries following the drama of thalidomide. In 2013, four French registries of congenital malformations in France provide the systematic epidemiological surveillance of birth defects. All are part of international networks of registries, especially European surveillance of congenital anomalies (EUROCAT). If the development of prevention actions including prenatal diagnosis has gradually led the registries to play a key role of assessment on the impact of public health policies, one of the major roles of registries of congenital malformations remains early detection of clusters of malformations secondary to teratogenic effects. © 2014 Société Française de Pharmacologie et de Thérapeutique.

  8. Data Type Registry - Cross Road Between Catalogs, Data And Semantics

    Science.gov (United States)

    Richard, S. M.; Zaslavsky, I.; Bristol, S.

    2017-12-01

    As more data become accessible online, the opportunity is increasing to improve search for information within datasets and for automating some levels of data integration. A prerequisite for these advances is indexing the kinds of information that are present in datasets and providing machine actionable descriptions of data structures. We are exploring approaches to enabling these capabilities in the EarthCube DigitalCrust and Data Discovery Hub Building Block projects, building on the Data type registry (DTR) workgroup activity in the Research Data Alliance. We are prototyping a registry implementation using the CNRI Cordra platform and API to enable 'deep registration' of datasets for building hydrogeologic models of the Earth's Crust, and executing complex science scenarios for river chemistry and coral bleaching data. These use cases require the ability to respond to queries such as: What are properties of Entity X; What entities include property Y (or L, M, N…), and What DataTypes are about Entity X and include property Y. Development of the registry to enable these capabilities requires more in-depth metadata than is commonly available, so we are also exploring approaches to analyzing simple tabular data to automate recognition of entities and properties, and assist users with establishing semantic mappings to data integration vocabularies. This poster will review the current capabilities and implementation of a data type registry.

  9. Evaluation of participant recruitment methods to a rare disease online registry.

    Science.gov (United States)

    Johnson, Kimberly J; Mueller, Nancy L; Williams, Katherine; Gutmann, David H

    2014-07-01

    Internet communication advances provide new opportunities to assemble individuals with rare diseases to online patient registries from wide geographic areas for research. However, there is little published information on the efficacy of different recruitment methods. Here we describe recruitment patterns and the characteristics of individuals with the self-identified autosomal dominant genetic disorder neurofibromatosis type 1 (NF1) who participated in an online patient registry during the 1-year period from 1/1/2012 to 12/31/2012. We employed four main mechanisms to alert potential participants to the registry: (1) Facebook and Google advertising, (2) government and academic websites, (3) patient advocacy groups, and (4) healthcare providers. Participants reported how they first heard about the registry through an online questionnaire. During the 1-year period, 880 individuals participated in the registry from all 50 U.S. States, the District of Columbia, Puerto Rico, and 39 countries. Facebook and Google were reported as referral sources by the highest number of participants (n=550, 72% Facebook), followed by healthcare providers (n=74), and government and academic websites (n=71). The mean participant age was 29±18 years and most participants reported White race (73%) and female sex (62%) irrespective of reported referral source. Internet advertising, especially through Facebook, resulted in efficient enrollment of large numbers of individuals with NF1. Our study demonstrates the potential utility of this approach to assemble individuals with a rare disease from across the world for research studies. © 2014 Wiley Periodicals, Inc.

  10. Adoption and implementation of mandated diabetes registries by community health centers.

    Science.gov (United States)

    Helfrich, Christian D; Savitz, Lucy A; Swiger, Kathleen D; Weiner, Bryan J

    2007-07-01

    Innovations adopted by healthcare organizations are often externally mandated. However, few studies examine how mandated innovations progress from adoption to sustained effective use. This study uses Rogers's model of organizational innovation to explore community health centers' (CHCs') mandated adoption and implementation of disease registries in the federal Health Disparities Collaborative (HDC). Case studies were conducted on six CHCs in North Carolina participating in the HDC on type 2 diabetes mellitus. Data were collected from semistructured interviews with key staff, and from site-level and individual-level surveys. Although disease registry adoption and implementation were mandated, CHCs exercised prerogative in the timing of registry adoption and the functions emphasized. Executive and medical director involvement, often directly on the HDC teams, was the single most salient influence on adoption and implementation. Staff members' personal experience with diabetes also provided context and gave registries added significance. Participants lauded HDC's technique of small-scale, rapid-cycle change, but valued even more shared problem solving and peer learning among HDC teams. However, lack of cross-training, inadequate resources, and staff turnover posed serious threats to sustainability of the registries. The present study illustrates the usefulness of Rogers's model for studying mandated innovation and highlights several key factors, including direct, personal involvement of organizational leadership, and shared problem solving and peer learning facilitated by the HDC. However, these six CHCs elected to participate early in the HDC, and may not be typical of North Carolina's remaining CHCs. Furthermore, most face important long-term challenges that threaten routinization.

  11. Functional principles of registry-based service discovery

    NARCIS (Netherlands)

    Sundramoorthy, V.; Tan, C.; Hartel, P.H.; Hartog, den J.I.; Scholten, J.

    2005-01-01

    As Service Discovery Protocols (SDP) are becoming increasingly important for ubiquitous computing, they must behave according to predefined principles. We present the functional Principles of Service Discovery for robust, registry-based service discovery. A methodology to guarantee adherence to

  12. 75 FR 29350 - Draft Guidance for Industry: Questions and Answers Regarding the Reportable Food Registry as...

    Science.gov (United States)

    2010-05-25

    ...] Draft Guidance for Industry: Questions and Answers Regarding the Reportable Food Registry as Established.... The agency is also seeking comments from industry on the Reportable Food Registry requirements, and... the implementation of the Reportable Food Registry on September 8, 2009, and informs industry about...

  13. EPA Facility Registry Service (FRS): Wastewater Treatment Plants

    Data.gov (United States)

    U.S. Environmental Protection Agency — This GIS dataset contains data on wastewater treatment plants, based on EPA's Facility Registry Service (FRS), EPA's Integrated Compliance Information System (ICIS)...

  14. How Suitable Are Registry Data for Recurrence Risk Calculations?

    DEFF Research Database (Denmark)

    Ellesøe, Sabrina Gade; Jensen, Anders Boeck; Ängquist, Lars Henrik

    2016-01-01

    if registry data are used indiscriminately. Here, we investigated the consequences of misclassifications for the RRR using validated diagnoses on Danish patients with familial CHD. METHODS: Danish citizens are assigned a civil registration number (CPR number) at birth or immigration, which acts as a unique...... of the PPVs of diagnoses in the Danish registries, and from this, we deduced the false discovery rate (FDR). To measure the consequences on the RRR, the FDR was applied to a simulated data set with true RRR values of 2 and 10. RESULTS: We validated diagnoses of 2,442 patients from 1,593 families. Of these...

  15. Statistical Process Control: A Quality Tool for a Venous Thromboembolic Disease Registry.

    Science.gov (United States)

    Posadas-Martinez, Maria Lourdes; Rojas, Liliana Paloma; Vazquez, Fernando Javier; De Quiros, Fernan Bernaldo; Waisman, Gabriel Dario; Giunta, Diego Hernan

    2016-01-01

    We aim to describe Statistical Control Process as a quality tool for the Institutional Registry of Venous Thromboembolic Disease (IRTD), a registry developed in a community-care tertiary hospital in Buenos Aires, Argentina. The IRTD is a prospective cohort. The process of data acquisition began with the creation of a computerized alert generated whenever physicians requested imaging or laboratory study to diagnose venous thromboembolism, which defined eligible patients. The process then followed a structured methodology for patient's inclusion, evaluation, and posterior data entry. To control this process, process performance indicators were designed to be measured monthly. These included the number of eligible patients, the number of included patients, median time to patient's evaluation, and percentage of patients lost to evaluation. Control charts were graphed for each indicator. The registry was evaluated in 93 months, where 25,757 patients were reported and 6,798 patients met inclusion criteria. The median time to evaluation was 20 hours (SD, 12) and 7.7% of the total was lost to evaluation. Each indicator presented trends over time, caused by structural changes and improvement cycles, and therefore the central limit suffered inflexions. Statistical process control through process performance indicators allowed us to control the performance of the registry over time to detect systematic problems. We postulate that this approach could be reproduced for other clinical registries.

  16. Record linkage between hospital discharges and mortality registries for motor neuron disease case ascertainment for the Spanish National Rare Diseases Registry.

    Science.gov (United States)

    Ruiz, Elena; Ramalle-Gómara, Enrique; Quiñones, Carmen

    2014-06-01

    Our objective was to analyse the coverage of hospital discharge data and the mortality registry (MR) of La Rioja to ascertain motor neuron disease (MND) cases to be included in the Spanish National Rare Diseases Registry. MND cases that occurred in La Rioja during the period 1996-2011 were selected from hospital discharge data and the MR by means of the International Classification of Diseases. Review of the medical histories was carried out to confirm the causes of death reported. Characteristics of the population with MND were analysed. A total of 133 patients with MND were detected in La Rioja during the period 1996-2011; 30.1% were only recorded in the hospital discharges data, 12.0% only in the MR, and 57.9% were recorded by both databases. Medical records revealed a miscoding of patients who had been diagnosed with progressive supranuclear palsy but were recorded in the MR with an MND code. In conclusion, the hospital discharges data and the MR appear to be complementary and are valuable databases for the Spanish National Rare Diseases Registry when MNDs are properly codified. Nevertheless, it would be advisable to corroborate the validity of the MR as data source since the miscoding of progressive supranuclear palsy has been corrected.

  17. Self-reporting bias in Chinook salmon sport fisheries in Idaho: implications for roving creel surveys

    Science.gov (United States)

    McCormick, Joshua L.; Quist, Michael C.; Schill, Daniel J.

    2013-01-01

    Self-reporting bias in sport fisheries of Chinook Salmon Oncorhynchus tshawytscha in Idaho was quantified by comparing observed and angler-reported data. A total of 164 observed anglers fished for 541 h and caught 74 Chinook Salmon. Fifty-eight fish were harvested and 16 were released. Anglers reported fishing for 604 h, an overestimate of 63 h. Anglers reported catching 66 fish; four less harvested and four less released fish were reported than observed. A Monte Carlo simulation revealed that when angler-reported data were used, total catch was underestimated by 14–15 fish (19–20%) using the ratio-of-means estimator to calculate mean catch rate. Negative bias was reduced to six fish (8%) when the means-of-ratio estimator was used. Multiple linear regression models to predict reporting bias in time fished had poor predictive value. However, actual time fished and a categorical covariate indicating whether the angler fished continuously during their fishing trip were two variables that were present in all of the top a priori models evaluated. Underreporting of catch and overreporting of time fished by anglers present challenges when managing Chinook Salmon sport fisheries. However, confidence intervals were near target levels and using more liberal definitions of angling when estimating effort in creel surveys may decrease sensitivity to bias in angler-reported data.

  18. Nursing registries of educational actions for patients submitted to hip arthroplasty

    Directory of Open Access Journals (Sweden)

    Laiana Lauser Silveira

    2015-12-01

    Full Text Available A retrospective, descriptive study of quantitative approach, aimed to identify nursing registries of educational actions for patients submitted to hip arthroplasty. The investigation was conducted in a university hospital in the South of Brazil, with a sample of 112 records from admitted patients. Data were collected through a checklist in June of 2013, and statistically analyzed. The educational registry was present in 60 (53% records. Regarding the content, the post-surgery care 36 (53%, mobilization 23 (20,5% and bed exit 21 (18,8% were prevalent and were found in a total of 56 (50% records on the Nursing Evolution document. Although nursing registries present aspects related to patient’s education, better results could be obtained with the intervention operationalization, linked to nurse’s permanent education.

  19. EPA Facility Registry Service (FRS): PCS_NPDES_MAJOR

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that are...

  20. EPA Facility Registry Service (FRS): ER_WWTP_NPDES

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of Waste Water Treatment...

  1. EPA Facility Registry Service (FRS): AIRS_AFS_MAJOR

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  2. The Danish Schizophrenia Registry

    DEFF Research Database (Denmark)

    Baandrup, Lone; Cerqueira, Charlotte; Haller, Lea

    2016-01-01

    Aim of database: To systematically monitor and improve the quality of treatment and care of patients with schizophrenia in Denmark. In addition, the database is accessible as a resource for research. Study population: Patients diagnosed with schizophrenia and receiving mental health care...... to the data for use in specific research projects by applying to the steering committee. Conclusion: The Danish Schizophrenia Registry represents a valuable source of informative data to monitor and improve the quality of care of patients with schizophrenia in Denmark. However, continuous resources and time...

  3. Bipartite networks improve understanding of effects of waterbody size and angling method on angler–fish interactions

    Science.gov (United States)

    Chizinski, Christopher J.; Martin, Dustin R.; Shizuka, Daizaburo; Pope, Kevin L.

    2018-01-01

    Networks used to study interactions could provide insights to fisheries. We compiled data from 27 297 interviews of anglers across waterbodies that ranged in size from 1 to 12 113 ha. Catch rates of fish species among anglers grouped by species targeted generally differed between angling methods (bank or boat). We constructed angler–catch bipartite networks (angling method specific) between anglers and fish and measured several network metrics. There was considerable variation in networks among waterbodies, with multiple metrics influenced by waterbody size. Number of species-targeting angler groups and number of fish species caught increased with increasing waterbody size. Mean number of links for species-targeting angler groups and fish species caught also increased with waterbody size. Connectance (realized proportion of possible links) of angler–catch interaction networks decreased slower for boat anglers than for bank anglers with increasing waterbody size. Network specialization (deviation of number of interactions from expected) was not significantly related to waterbody size or angling methods. Application of bipartite networks in fishery science requires careful interpretation of outputs, especially considering the numerous confounding factors prevalent in recreational fisheries.

  4. The Mid-Atlantic Twin Registry, revisited.

    Science.gov (United States)

    Lilley, Emily C H; Silberg, Judy L

    2013-02-01

    The Mid-Atlantic Twin Registry (MATR) is a population-based registry of more than 56,000 twins primarily born or living in Virginia, North Carolina, and South Carolina. The MATR employs several methods of ascertaining twins, and devotes considerable resources to tracking and maintaining communication with MATR participants. Researchers may utilize the MATR for administration of research services including study recruitment, collection of DNA, archival data set creation, as well as data collection through mailed, phone, or online surveys. In addition, the MATR houses the MATR Repository, with over 1,200 blood samples available for researchers interested in DNA genotyping. For over 35 years MATR twins have participated in research studies with investigators from diverse scientific disciplines and various institutions. These studies, which have resulted in numerous publications, have covered a range of topics, including the human microbiome, developmental psychopathology, depression, anxiety, substance use, epigenetics of aging, children of twins, pre-term birth, social attitudes, seizures, eating disorders, as well as sleep homeostasis. Researchers interested in utilizing twins are encouraged to contact the MATR to discuss potential research opportunities.

  5. The national registry for radiation workers

    International Nuclear Information System (INIS)

    Kendall, G.M.; Dennis, J.A.

    1985-01-01

    The National Registry for Radiation Workers (NRRW) was set up by the National Radiological Protection Board in 1976. The analysis of registry data has four aims: a) To determine whether there is any evidence of differences in the causes of and ages at death of workers exposed to different levels of radiation and, if any differences are found, whether it seems likely that they can be attributed to radiation. b) To estimate the magnitude of the risk, if any differences are found, that seem likely to be attributable to radiation. c) To estimate bounds to the possible risk for particular types of malignancy, such as leukemia. d) To compare the mortality experience of radiation workers with national mortality data and also with that of other industrial groups for whom data exist. If current estimates of the risks of ionizing radiation are correct, very few deaths will be induced in the study population and it will be impossible to detect them statistically. The NRRW currently includes records for over 60,000 individuals. 6 refs

  6. EPA Facility Registry Service (FRS): Facility Interests Dataset

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are available in...

  7. Recruitment of representative samples for low incidence cancer populations: Do registries deliver?

    Directory of Open Access Journals (Sweden)

    Sanson-Fisher Rob

    2011-01-01

    Full Text Available Abstract Background Recruiting large and representative samples of adolescent and young adult (AYA cancer survivors is important for gaining accurate data regarding the prevalence of unmet needs in this population. This study aimed to describe recruitment rates for AYAs recruited through a cancer registry with particular focus on: active clinician consent protocols, reasons for clinicians not providing consent and the representativeness of the final sample. Methods Adolescents and young adults aged 14 to19 years inclusive and listed on the cancer registry from January 1 2002 to December 31 2007 were identified. An active clinician consent protocol was used whereby the registry sent a letter to AYAs primary treating clinicians requesting permission to contact the survivors. The registry then sent survivors who received their clinician's consent a letter seeking permission to forward their contact details to the research team. Consenting AYAs were sent a questionnaire which assessed their unmet needs. Results The overall consent rate for AYAs identified as eligible by the registry was 7.8%. Of the 411 potentially eligible survivors identified, just over half (n = 232, 56% received their clinician's consent to be contacted. Of those 232 AYAs, 65% were unable to be contacted. Only 18 AYAs (7.8% refused permission for their contact details to be passed on to the research team. Of the 64 young people who agreed to be contacted, 50% (n = 32 completed the questionnaire. Conclusions Cancer registries which employ active clinician consent protocols may not be appropriate for recruiting large, representative samples of AYAs diagnosed with cancer. Given that AYA cancer survivors are highly mobile, alternative methods such as treatment centre and clinic based recruitment may need to be considered.

  8. Treatment of autoinflammatory diseases: results from the Eurofever Registry and a literature review

    NARCIS (Netherlands)

    Haar, N. Ter; Lachmann, H.; Ozen, S.; Woo, P.; Uziel, Y.; Modesto, C.; Kone-Paut, I.; Cantarini, L.; Insalaco, A.; Neven, B.; Hofer, M.; Rigante, D.; Al-Mayouf, S.; Touitou, I.; Gallizzi, R.; Papadopoulou-Alataki, E.; Martino, S.; Kuemmerle-Deschner, J.; Obici, L.; Iagaru, N.; Simon, A.; Nielsen, S.; Martini, A.; Ruperto, N.; Gattorno, M.; Frenkel, J.; et al.,

    2013-01-01

    OBJECTIVE: To evaluate the response to treatment of autoinflammatory diseases from an international registry and an up-to-date literature review. METHODS: The response to treatment was studied in a web-based registry in which clinical information on anonymised patients with autoinflammatory diseases

  9. Diel use of a saltwater creek by white-tip reef sharks Triaenodon obesus (Carcharhiniformes: Carcharhinidae in Academy Bay, Galapagos Islands

    Directory of Open Access Journals (Sweden)

    César Peñaherrera

    2012-06-01

    Full Text Available White-tip reef sharks are common inhabitants of the shallow waters surrounding the Galapagos Islands, where several known aggregation sites have become touristic attractions. With the aim to describe site fidelity and residency patterns of the white-tip reef sharks in a saltwater creek, we used the ultrasonic telemetry method. The study was undertaken in a saltwater channel South of Academy Bay, Santa Cruz Island, from May 2008-September 2009. A total of nine transmitters were attached to sharks and ultrasonic receivers were deployed at the inner and outside areas of the creek. From the total of fitted sharks, four lost their transmitters. The results obtained with the remaining sharks showed an elevated use of the inner area of the channel during the day, with more use of the external area during the night. However, none of the sharks were detected at the site every day, suggesting that they may have a number of preferred sites within their home range. More studies are needed to detail the home range and habitat use of this species, and to guide its protection level in the AcademyBay area. Rev. Biol. Trop. 60 (2: 735-743. Epub 2012 June 01.Los tiburones punta blanca de arrecife son habitantes comunes de las aguas que rodean las Islas Galápagos, por lo que muchos de sus sitios de agregación se han convertido en atractivos turísticos. Con el objetivo de describir la fidelidad del sitio y los patrones de residencia de nueve tiburones desde mayo 2008-septiembre 2009, se utilizó telemetría ultrasónica en un canal de agua salada en el sur de Bahía Academia, Isla Santa Cruz. A pesar de que cuatro tiburones perdieron sus transmisores, los restantes tiburones monitoreados mostraron un uso elevado del interior del canal durante el día y del exterior durante la noche. Sin embargo, ninguno de los tiburones fue detectado en el sitio diariamente, lo cual sugiere que deben tener un número mayor de sitios preferidos dentro de su área de vida.

  10. Validation of the Netherlands pacemaker patient registry

    NARCIS (Netherlands)

    Dijk, WA; Kingma, T; Hooijschuur, CAM; Dassen, WRM; Hoorntje, JCA; van Gelder, LM

    1997-01-01

    This paper deals with the validation of the information stored in the Netherlands central pacemaker patient database. At this moment the registry database contains information on more than 70500 patients, 85000 pacemakers and 90000 leads. The validation procedures consisted of an internal

  11. Design of the Familial Hypercholesterolaemia Australasia Network Registry: Creating Opportunities for Greater International Collaboration.

    Science.gov (United States)

    Bellgard, Matthew I; Walker, Caroline E; Napier, Kathryn R; Lamont, Leanne; Hunter, Adam A; Render, Lee; Radochonski, Maciej; Pang, Jing; Pedrotti, Annette; Sullivan, David R; Kostner, Karam; Bishop, Warrick; George, Peter M; O'Brien, Richard C; Clifton, Peter M; Bockxmeer, Frank M Van; Nicholls, Stephen J; Hamilton-Craig, Ian; Dawkins, Hugh Js; Watts, Gerald F

    2017-10-01

    Familial Hypercholesterolemia (FH) is the most common and serious monogenic disorder of lipoprotein metabolism that leads to premature coronary heart disease. There are over 65,000 people estimated to have FH in Australia, but many remain undiagnosed. Patients with FH are often under-treated, but with early detection, cascade family testing and adequate treatment, patient outcomes can improve. Patient registries are key tools for providing new information on FH and enhancing care worldwide. The development and design of the FH Australasia Network Registry is a crucial component in the comprehensive model of care for FH, which aims to provide a standardized, high-quality and cost-effective system of care that is likely to have the highest impact on patient outcomes. Informed by stakeholder engagement, the FH Australasia Network Registry was collaboratively developed by government, patient and clinical networks and research groups. The open-source, web-based Rare Disease Registry Framework was the architecture chosen for this registry owing to its open-source standards, modular design, interoperability, scalability and security features; all these are key components required to meet the ever changing clinical demands across regions. This paper provides a high level blueprint for other countries and jurisdictions to help inform and map out the critical features of an FH registry to meet their particular health system needs.

  12. The First 500 Registrations to the Research Registry®: Advancing Registration of Under-registered Study Types

    Directory of Open Access Journals (Sweden)

    Riaz Agha

    2016-09-01

    Full Text Available The Declaration of Helsinki 2013 encourages the registration of all research studies involving human participants. However, emphasis has been placed on prospective clinical trials, and it is estimated that only 10% of observational studies are registered. In response, Research Registry® was launched in February 2015; a retrospectively curated registry that is free and easy to use. Research Registry® enables prospective or retrospective registration of studies, including those study types that cannot be registered on existing registries. In this study, we describe the first 500 registrations on Research Registry®.Since the launch of Research Registry® in February 2015, data of registrations have been collected, including type of studies registered, country of origin and data curation activity. Inappropriate registrations, such as duplicates, were identified by the data curation process. These were removed from the database or modified as required. A quality score was assigned for each registration, based on Bradford-Hill’s criteria on what research studies should convey. Changes in quality scores over time were assessed. 500 studies were registered on Research Registry® from February 2015 to October 2015, with a total of 1.7 million patients enrolled. The most common study types were retrospective cohort studies (37.2%, case series (14.8% and first-in-man case reports (10.4%. Registrations were received from 57 different countries; the most submissions were received from Turkey, followed by China and the United Kingdom. Retrospective data curation identified 80 studies that were initially registered as the incorrect study type, and were subsequently correct. The Kruskal-Wallis test identified a significant improvement in quality scores for registrations from February 2015 to October 2015 (p < 0.0001.Since its conception in February 2015, Research Registry® has established itself as a new registry that is free, easy to use and enables the

  13. The First 500 Registrations to the Research Registry®: Advancing Registration of Under-Registered Study Types.

    Science.gov (United States)

    Agha, Riaz; Fowler, Alexander J; Limb, Christopher; Al Omran, Yasser; Sagoo, Harkiran; Koshy, Kiron; Jafree, Daniyal J; Anwar, Mohammed Omer; McCullogh, Peter; Orgill, Dennis Paul

    2016-01-01

    The Declaration of Helsinki 2013 encourages the registration of all research studies involving human participants. However, emphasis has been placed on prospective clinical trials, and it is estimated that only 10% of observational studies are registered. In response, Research Registry ® was launched in February 2015; a retrospectively curated registry that is free and easy to use. Research Registry ® enables prospective or retrospective registration of studies, including those study types that cannot be registered on existing registries. In this study, we describe the first 500 registrations on Research Registry ® . Since the launch of Research Registry ® in February 2015, data of registrations have been collected, including type of studies registered, country of origin, and data curation activity. Inappropriate registrations, such as duplicates, were identified by the data curation process. These were removed from the database or modified as required. A quality score was assigned for each registration, based on Sir Austin Bradford Hill's criteria on what research studies should convey. Changes in quality scores over time were assessed. A total of 500 studies were registered on Research Registry ® from February 2015 to October 2015, with a total of 1.7 million patients enrolled. The most common study types were retrospective cohort studies (37.2%), case series (14.8%), and first-in-man case reports (10.4%). Registrations were received from 57 different countries; the most submissions were received from Turkey, followed by China and the United Kingdom. Retrospective data curation identified 80 studies that were initially registered as the incorrect study type, and were subsequently correct. The Kruskal-Wallis test identified a significant improvement in quality scores for registrations from February 2015 to October 2015 ( p  < 0.0001). Since its conception in February 2015, Research Registry ® has established itself as a new registry that is free, easy to

  14. Implementing Sustainable Data Collection for a Cardiac Outcomes Registry in an Australian Public Hospital.

    Science.gov (United States)

    Cox, Nicholas; Brennan, Angela; Dinh, Diem; Brien, Rita; Cowie, Kath; Stub, Dion; Reid, Christopher M; Lefkovits, Jeffrey

    2018-04-01

    Clinical outcome registries are an increasingly vital component of ensuring quality and safety of patient care. However, Australian hospitals rarely have additional resources or the capacity to fund the additional staff time to complete the task of data collection and entry. At the same time, registry funding models do not support staff for the collection of data at the site but are directed towards the central registry tasks of data reporting, managing and quality monitoring. The sustainability of a registry is contingent on building efficiencies into data management and collection. We describe the methods used in a large Victorian public hospital to develop a sustainable data collection system for the Victorian Cardiac Outcomes Registry (VCOR), using existing staff and resources common to many public hospitals. We describe the features of the registry and the hospital specific strategies that allowed us to do this as part of our routine business of providing good quality cardiac care. All clinical staff involved in patient care were given some data collection task with the entry of these data embedded into the staff's daily workflow. A senior cardiology registrar was empowered to allocate data entry tasks to colleagues when data were found to be incomplete. The task of 30-day follow-up proved the most onerous part of data collection. Cath-lab nursing staff were allocated this role. With hospital accreditation and funding models moving towards performance based quality indicators, collection of accurate and reliable information is crucial. Our experience demonstrates the successful implementation of clinical outcome registry data collection in a financially constrained public hospital environment utilising existing resources. Copyright © 2017. Published by Elsevier B.V.

  15. A Dutch Nationwide Bariatric Quality Registry: DATO.

    Science.gov (United States)

    Poelemeijer, Youri Q M; Liem, Ronald S L; Nienhuijs, Simon W

    2017-12-22

    In the Netherlands, the number of bariatric procedures increased exponentially in the 90s. To ensure and improve the quality of bariatric surgery, the nationwide Dutch Audit for Treatment of Obesity (DATO) was established in 2014. The audit was coordinated by the Dutch Institute for Clinical Auditing (DICA). This article provides a review of the aforementioned process in establishing a nationwide registry in the Netherlands. In collaboration with the DATO's scientific committee and other stakeholders, an annual list of several external quality indicators was formulated. This list consists of volume, process, and outcome indicators. In addition to the annual external indicators, the database permits individual hospitals to analyze their own data. The dashboard provides several standardized reports and detailed quality indicators, which are updated on a weekly base. Since the start, all 18 Dutch bariatric centers participated in the nationwide audit. A total of 21,941 cases were registered between 2015 and 2016. By 2016, the required variables were registered in 94.3% of all cases. A severe complicated course was seen in 2.87%, and mortality in 0.05% in 2016. The first-year follow-up shows a > 20% TWL in 86.1% of the registered cases. The DATO has become rapidly a mature registry. The well-organized structure of the national audit institution DICA and governmental funding were essential. However, most important were the bariatric teams themselves. The authors believe reporting the results from the registry has already contributed to more knowledge and acceptance by other health care providers.

  16. Electronic warehouse receipts registry as a step from paper to electronic warehouse receipts

    Directory of Open Access Journals (Sweden)

    Kovačević Vlado

    2016-01-01

    Full Text Available The aim of this paper is to determine the economic viability of the electronic warehouse receipt registry introduction, as a step toward electronic warehouse receipts. Both forms of warehouse receipt paper and electronic exist in practice, but paper warehouse receipts are more widespread. In this paper, the dematerialization process is analyzed in two steps. The first step is the dematerialization of warehouse receipt registry, with warehouse receipts still in paper form. The second step is the introduction of electronic warehouse receipts themselves. Dematerialization of warehouse receipts is more complex than that for financial securities, because of the individual characteristics of each warehouse receipt. As a consequence, electronic warehouse receipts are in place for only to a handful of commodities, namely cotton and a few grains. Nevertheless, the movement towards the electronic warehouse receipt, which began several decades ago with financial securities, is now taking hold in the agricultural sector. In this paper is analyzed Serbian electronic registry, since the Serbia is first country in EU with electronic warehouse receipts registry donated by FAO. Performed analysis shows the considerable impact of electronic warehouse receipts registry establishment on enhancing the security of the system of public warehouses, and on advancing the trade with warehouse receipt.

  17. The Importance of Registries in the Postmarketing Surveillance of Surgical Meshes.

    Science.gov (United States)

    Köckerling, Ferdinand; Simon, Thomas; Hukauf, Martin; Hellinger, Achim; Fortelny, Rene; Reinpold, Wolfgang; Bittner, Reinhard

    2017-06-07

    To assess the role of registries in the postmarketing surveillance of surgical meshes. To date, surgical meshes are classified as group II medical devices. Class II devices do not require premarket clearance by clinical studies. Ethicon initiated a voluntary market withdrawal of Physiomesh for laparoscopic use after an analysis of unpublished data from the 2 large independent hernia registries-Herniamed German Registry and Danish Hernia Database. This paper now presents the relevant data from the Herniamed Registry. The present analysis compares the prospective perioperative and 1-year follow-up data collected for all patients with incisional hernia who had undergone elective laparoscopic intraperitoneal onlay mesh repair either with Physiomesh (n = 1380) or with other meshes recommended in the guidelines (n = 3834). Patients with Physiomesh repair had a markedly higher recurrence rate compared with the other recommended meshes (12.0% vs 5.0%; P manufacturing company must be taken into account.This is an open access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal. http://creativecommons.org/licenses/by-nc-nd/4.0.

  18. Evaluation of tumor registry validity in Samsung medical center radiation oncology department

    International Nuclear Information System (INIS)

    Park, Won; Huh, Seung Jae; Kim, Dae Yong; Shin, Seong Soo; Ahn, Yong Chan; Lim, Do Hoon; Kim, Seon Woo

    2004-01-01

    A tumor registry system for the patients treated by radiotherapy at Samsung Medical Center since the opening of a hospital at 1994 was employed. In this study, the tumor registry system was introduced and the validity of the tumor registration was analyzed. The tumor registry system was composed of three parts: patient demographic, diagnostic, and treatment information. All data were input in a screen using a mouse only. Among the 10,000 registered cases in the tumor registry system until Aug, 2002, 199 were randomly selected and their registration data were compared with the patients' medical records. Total input errors were detected in 15 cases (7.5%). There were 8 error items in the part relating to diagnostic information: tumor site 3, pathology 2, AJCC staging 2 and performance status 1. In the part relating to treatment information there were 9 mistaken items: combination treatment 4, the date of initial treatment 3 and radiation completeness 2. According to the assignment doctor, the error ratio was consequently variable. The doctors who did no double-checks showed higher errors than those that did (15.6%: 3.7%). Our tumor registry had errors within 2% for each item. Although the overall data quality was high, further improvement might be achieved through promoting sincerity, continuing training periodic validity tests and keeping double-checks. Also, some items associated with the hospital information system will be input automatically in the next step

  19. Rapid Development of Specialty Population Registries and Quality Measures from Electronic Health Record Data*. An Agile Framework.

    Science.gov (United States)

    Kannan, Vaishnavi; Fish, Jason S; Mutz, Jacqueline M; Carrington, Angela R; Lai, Ki; Davis, Lisa S; Youngblood, Josh E; Rauschuber, Mark R; Flores, Kathryn A; Sara, Evan J; Bhat, Deepa G; Willett, DuWayne L

    2017-06-14

    Creation of a new electronic health record (EHR)-based registry often can be a "one-off" complex endeavor: first developing new EHR data collection and clinical decision support tools, followed by developing registry-specific data extractions from the EHR for analysis. Each development phase typically has its own long development and testing time, leading to a prolonged overall cycle time for delivering one functioning registry with companion reporting into production. The next registry request then starts from scratch. Such an approach will not scale to meet the emerging demand for specialty registries to support population health and value-based care. To determine if the creation of EHR-based specialty registries could be markedly accelerated by employing (a) a finite core set of EHR data collection principles and methods, (b) concurrent engineering of data extraction and data warehouse design using a common dimensional data model for all registries, and (c) agile development methods commonly employed in new product development. We adopted as guiding principles to (a) capture data as a byproduct of care of the patient, (b) reinforce optimal EHR use by clinicians, (c) employ a finite but robust set of EHR data capture tool types, and (d) leverage our existing technology toolkit. Registries were defined by a shared condition (recorded on the Problem List) or a shared exposure to a procedure (recorded on the Surgical History) or to a medication (recorded on the Medication List). Any EHR fields needed - either to determine registry membership or to calculate a registry-associated clinical quality measure (CQM) - were included in the enterprise data warehouse (EDW) shared dimensional data model. Extract-transform-load (ETL) code was written to pull data at defined "grains" from the EHR into the EDW model. All calculated CQM values were stored in a single Fact table in the EDW crossing all registries. Registry-specific dashboards were created in the EHR to display

  20. The Cerebral Palsy Research Registry: Development and Progress Toward National Collaboration in the United States

    Science.gov (United States)

    Hurley, Donna S.; Sukal-Moulton, Theresa; Msall, Michael E.; Gaebler-Spira, Deborah; Krosschell, Kristin J.; Dewald, Julius P.

    2011-01-01

    Cerebral palsy is the most common neurodevelopmental motor disability in children. The condition requires medical, educational, social, and rehabilitative resources throughout the life span. Several countries have developed population-based registries that serve the purpose of prospective longitudinal collection of etiologic, demographic, and functional severity. The United States has not created a comprehensive program to develop such a registry. Barriers have been large population size, poor interinstitution collaboration, and decentralized medical and social systems. The Cerebral Palsy Research Registry was created to fill the gap between population and clinical-based cerebral palsy registries and promote research in the field. This is accomplished by connecting persons with cerebral palsy, as well as their families, to a network of regional researchers. This article describes the development of an expandable cerebral palsy research registry, its current status, and the potential it has to affect families and persons with cerebral palsy in the United States and abroad. PMID:21677201

  1. Radioactive waste management registry. A software tool for managing information on waste inventory

    International Nuclear Information System (INIS)

    Miaw, S.T.W.

    2001-01-01

    The IAEA developed a software tool, the RWM Registry (Radioactive Waste Management Registry) which is primarily concerned with the management and recording of reliable information on the radioactive waste during its life-cycle, i.e. from generation to disposal and beyond. In the current version, it aims to assist the management of waste from nuclear applications. the Registry is a managerial tool and offers an immediate overview of the various waste management steps and activities. This would facilitate controlling, keeping track of waste and waste package, planning, optimizing of resources, monitoring of related data, disseminating of information, taking actions and making decisions related to the waste management. Additionally, the quality control of waste products and a Member State's associated waste management quality assurance programme are addressed. The tool also facilitates to provide information on waste inventory as required by the national regulatory bodies. The RWM Registry contains two modules which are described in detail

  2. 50 CFR 32.32 - Illinois.

    Science.gov (United States)

    2010-10-01

    ... breathing apparatus. 9. On A-41, Bluegill, Managers, Honkers, and Vistors Ponds: i. Anglers may fish only... Fisheries UNITED STATES FISH AND WILDLIFE SERVICE, DEPARTMENT OF THE INTERIOR (CONTINUED) THE NATIONAL... west of Wolf Creek Road: i. Anglers may fish from boats all year. ii. Anglers must remove all trotlines...

  3. 50 CFR 32.59 - Rhode Island.

    Science.gov (United States)

    2010-10-01

    .... [Reserved] B. Upland Game Hunting. [Reserved] C. Big Game Hunting. [Reserved] D. Sport Fishing. Anglers may.... [Reserved] C. Big Game Hunting. [Reserved] D. Sport Fishing. Anglers may surf fish in the Atlantic Ocean and.... Big Game Hunting. [Reserved] D. Sport Fishing. Anglers may surf fish in the Atlantic Ocean from the...

  4. An active registry for bioinformatics web services.

    NARCIS (Netherlands)

    Pettifer, S.; Thorne, D.; McDermott, P.; Attwood, T.; Baran, J.; Bryne, J.C.; Hupponen, T.; Mowbray, D.; Vriend, G.

    2009-01-01

    SUMMARY: The EMBRACE Registry is a web portal that collects and monitors web services according to test scripts provided by the their administrators. Users are able to search for, rank and annotate services, enabling them to select the most appropriate working service for inclusion in their

  5. Uses of cancer registries for public health and clinical research in Europe: Results of the European Network of Cancer Registries survey among 161 population-based cancer registries during 2010–2012

    NARCIS (Netherlands)

    Siesling, Sabine; Louwman, W.J.; Kwast, A.; van den Hurk, C.J.G.; O'Callaghan, M.; Rosso, S.; Zanetti, R.; Storm, H.; Comber, H.; Steliarova-Foucher, E.; Coebergh, J.W.W.

    2015-01-01

    Aim To provide insight into cancer registration coverage, data access and use in Europe. This contributes to data and infrastructure harmonisation and will foster a more prominent role of cancer registries (CRs) within public health, clinical policy and cancer research, whether within or outside the

  6. Are data from national quality registries used in quality improvement at Swedish hospital clinics?

    Science.gov (United States)

    Fredriksson, Mio; Halford, Christina; Eldh, Ann Catrine; Dahlström, Tobias; Vengberg, Sofie; Wallin, Lars; Winblad, Ulrika

    2017-11-01

    To investigate the use of data from national quality registries (NQRs) in local quality improvement as well as purported key factors for effective clinical use in Sweden. Comparative descriptive: a web survey of all Swedish hospitals participating in three NQRs with different levels of development (certification level). Heads of the clinics and physician(s) at clinics participating in the Swedish Stroke Register (Riksstroke), the Swedish National Registry of Gallstone Surgery and Endoscopic Retrograde Cholangiopancreatography (GallRiks) and the Swedish Lung Cancer Registry (NLCR). Individual and unit level use of NQRs in local quality improvement, and perceptions on data quality, organizational conditions and user motivation. Riksstroke data were reported as most extensively used at individual and unit levels (x̅ 17.97 of 24 and x̅ 27.06 of 35). Data quality and usefulness was considered high for the two most developed NQRs (x̅ 19.86 for Riksstroke and x̅ 19.89 for GallRiks of 25). Organizational conditions were estimated at the same level for Riksstroke and GallRiks (x̅ 12.90 and x̅ 13.28 of 20) while the least developed registry, the NLCR, had lower estimates (x̅ 10.32). In Riksstroke, the managers requested registry data more often (x̅ 15.17 of 20). While there were significant differences between registries in key factors such as management interest, use of NQR data in local quality improvement seems rather prevalent, at least for Riksstroke. The link between the registry's level of development and factors important for routinization of innovations such as NQRs needs investigation. © The Author 2017. Published by Oxford University Press in association with the International Society for Quality in Health Care. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

  7. The design, construction and implementation of a computerised trauma registry in a developing South African metropolitan trauma service.

    Science.gov (United States)

    Laing, G L; Bruce, J L; Aldous, C; Clarke, D L

    2014-01-01

    The Pietermaritzburg Metropolitan Trauma Service formerly lacked a robust computerised trauma registry. This made surgical audit difficult for the purpose of quality of care improvement and development. We aimed to design, construct and implement a computerised trauma registry within our service. Twelve months following its implementation, we sought to examine and report on the quality of the registry. Formal ethical approval to maintain a computerised trauma registry was obtained prior to undertaking any design and development. Appropriate commercial software was sourced to develop this project. The registry was designed as a flat file. A flat file is a plain text or mixed text and binary file which usually contains one record per line or physical record. Thereafter the registry file was launched onto a secure server. This provided the benefits of access security and automated backups. Registry training was provided to clients by the developer. The exercise of data capture was then integrated into the process of service delivery, taking place at the endpoint of patient care (discharge, transfer or death). Twelve months following its implementation, the compliance rates of data entry were measured. The developer of this project managed to design, construct and implement an electronic trauma registry into the service. Twelve months following its implementation the data were extracted and audited to assess the quality. A total of 2640 patient entries were captured onto the registry. Compliance rates were in the order of eighty percent and client satisfaction rates were high. A number of deficits were identified. These included the omission of weekend discharges and underreporting of deaths. The construction and implementation of the computerised trauma registry was the beginning of an endeavour to continue improvements in the quality of care within our service. The registry provided a reliable audit at twelve months post implementation. Deficits and limitations were

  8. Department of Defense Birth and Infant Health Registry: select reproductive health outcomes, 2003-2014.

    Science.gov (United States)

    Bukowinski, Anna T; Conlin, Ava Marie S; Gumbs, Gia R; Khodr, Zeina G; Chang, Richard N; Faix, Dennis J

    2017-11-01

    Established following a 1998 directive, the Department of Defense Birth and Infant Health Registry (Registry) team conducts surveillance of select reproductive health outcomes among military families. Data are compiled from the Military Health System Data Repository and Defense Manpower Data Center to define the Registry cohort and outcomes of interest. Outcomes are defined using ICD-9/ICD-10 and Current Procedural Terminology codes, and include: pregnancy outcomes (e.g., live births, losses), birth defects, preterm births, and male:female infant sex ratio. This report includes data from 2003-2014 on 1,304,406 infants among military families and 258,332 pregnancies among active duty women. Rates of common adverse infant and pregnancy outcomes were comparable to or lower than those in the general US population. These observations, along with prior Registry analyses, provide reassurance that military service is not independently associated with increased risks for select adverse reproductive health outcomes. The Registry's diverse research portfolio demonstrates its unique capabilities to answer a wide range of questions related to reproductive health. These data provide the military community with information to identify successes and areas for improvement in prevention and care.

  9. The impact of a model-based clinical regional registry for attention-deficit hyperactivity disorder.

    Science.gov (United States)

    Zanetti, Michele; Cartabia, Massimo; Didoni, Anna; Fortinguerra, Filomena; Reale, Laura; Mondini, Matteo; Bonati, Maurizio

    2017-09-01

    This article describes the development and clinical impact of the Italian Regional ADHD Registry, aimed at collecting and monitoring diagnostic and therapeutic pathways of care for attention-deficit hyperactivity disorder children and adolescents, launched by the Italian Lombardy Region in June 2011. In particular, the model-based software used to run the registry and manage clinical care data acquisition and monitoring, is described. This software was developed using the PROSAFE programme, which is already used for data collection in many Italian intensive care units, as a stand-alone interface case report form. The use of the attention-deficit hyperactivity disorder regional registry led to an increase in the appropriateness of the clinical management of all patients included in the registry, proving to be an important instrument in ensuring an appropriate healthcare strategy for children and adolescents with attention-deficit/hyperactivity disorder.

  10. Comparing contemporary revision burden among hip and knee joint replacement registries

    Directory of Open Access Journals (Sweden)

    Brian J. McGrory, MD, MS

    2016-06-01

    Conclusions: Revision burden has gradually decreased for hip replacements and has remained relatively constant for knee replacements both for the last 4 years and compared to historic controls. Knee revision burden was lower than hip revision burden for each period examined. Revision burden is one measure that may be helpful in following the effect of changes in surgical technique and implant design over time in registry populations and may be a helpful way to compare overall results between registries.

  11. Patient reported outcomes in hip arthroplasty registries.

    Science.gov (United States)

    Paulsen, Aksel

    2014-05-01

    PROs are used increasingly in orthopedics and in joint registries, but still many aspects of use in this area have not been examined in depth. To be able to introduce PROs in the DHR in a scientific fashion, my studies were warranted; the feasibility of four often used PROs (OHS, HOOS, EQ-5D and SF-12) was examined in a registry context. Having the PROs in the target language is an absolute necessity, so I translated, cross-culturally adapted and validated a Danish language version of an often used PRO (OHS), since this PRO had no properly developed Danish language version. To minimize data loss and to maximize the data quality I validated our data capture procedure, an up to date AFP system, by comparing scannable, paper-based PROs, with manual single-key- and double-key entered data. To help further registry-PRO studies, I calculated the number of patients needed to discriminate between subgroups of age, sex, diagnosis, and prosthesis type for each of four often used PROs (OHS, HOOS, EQ-5D and SF-12), and to simplify the clinical interpretation of PRO scores and PRO change scores in PRO studies, I estimated MCII and PASS for two often used PROs (EQ-5D and HOOS). The feasibility study included 5,747 THA patients registered in the DHR, and I found only minor differences between the disease-specific and the generic PROs regarding ceiling and floor effects as well as discarded items. The HOOS, the OHS, the SF-12, and the EQ-5D are all appropriate PROs for administration in a hip registry. I found that group sizes from 51 to 1,566 were needed for subgroup analysis, depending on descriptive factors and choice of PRO. The AFP study included 200 THA patients (398 PROs, 4,875 items and 21,887 data fields), and gave excellent results provided use of highly structured questionnaires. OMR performed equally as well as manual double-key entering, and better than single-key entering. The PRO translation and validation study included 2,278 patients (and 212 patients for the test

  12. Few fish but many fishers: a case study of shore-based recreational ...

    African Journals Online (AJOL)

    Using a roving creel survey over 12 months, 3 765 shore-anglers were checked for catch and fishing effort information and a further 603 shoreanglers were interviewed using a detailed questionnaire. Fishing effort was higher on weekends (119 anglers per count) than during the week (37 anglers per count). The total ...

  13. The International Collaboration for Autism Registry Epidemiology (iCARE): Multinational Registry-Based Investigations of Autism Risk Factors and Trends

    Science.gov (United States)

    Schendel, Diana E.; Bresnahan, Michaeline; Carter, Kim W.; Francis, Richard W.; Gissler, Mika; Grønborg, Therese K.; Gross, Raz; Gunnes, Nina; Hornig, Mady; Hultman, Christina M.; Langridge, Amanda; Lauritsen, Marlene B.; Leonard, Helen; Parner, Erik T.; Reichenberg, Abraham; Sandin, Sven; Sourander, Andre; Stoltenberg, Camilla; Suominen, Auli; Surén, Pål; Susser, Ezra

    2013-01-01

    The International Collaboration for Autism Registry Epidemiology (iCARE) is the first multinational research consortium (Australia, Denmark, Finland, Israel, Norway, Sweden, USA) to promote research in autism geographical and temporal heterogeneity, phenotype, family and life course patterns, and etiology. iCARE devised solutions to challenges in…

  14. A novel method for rearing first-feeding larval zebrafish: polyculture with Type L saltwater rotifers (Brachionus plicatilis).

    Science.gov (United States)

    Best, Jason; Adatto, Isaac; Cockington, Jason; James, Althea; Lawrence, Christian

    2010-09-01

    Promoting high rates of growth and survival can be a major challenge in zebrafish culture, especially during the first-feeding stage. Here we describe a new rearing technique in which zebrafish larvae are polycultured in static tanks with Type "L" saltwater rotifers (Brachionus plicatilis) for the first 5 days of feeding (days 5-9 postfertilization). To demonstrate the effectiveness of this technique, we conducted rearing trials using fish from two different strains: AB and nacre. Growth, survival, water quality, and rotifer density were assayed daily through the polyculture phase (days 5-9), and during the transition to standard rearing conditions (days 10-12). After that point, once the fish were fully integrated onto recirculating systems, parameters were measured once per week out to day 30. In all trials, the fish displayed high rates of growth and survival throughout the three phases (polyculture, transition, and recirculating flow), indicating that this method may be employed during the critical first-feeding stage to help improve rearing performance in zebrafish facilities. Additionally, water quality parameters observed during the polyculture phase of the trials reveal that early zebrafish larvae are much more tolerant of elevated levels of ammonia and salinity than previously believed.

  15. Simulation of saltwater movement in the Upper Floridan aquifer in the Savannah, Georgia-Hilton Head Island, South Carolina, area, predevelopment-2004, and projected movement for 2000 pumping conditions

    Science.gov (United States)

    Provost, Alden M.; Payne, Dorothy F.; Voss, Clifford I.

    2006-01-01

    A digital model was developed to simulate ground-water flow and solute transport for the Upper Floridan aquifer in the Savannah, Georgia-Hilton Head Island, South Carolina, area. The model was used to (1) simulate trends of saltwater intrusion from predevelopment to the present day (1885-2004), (2) project these trends from the present day into the future, and (3) evaluate the relative influence of different assumptions regarding initial and boundary conditions and physical properties. The model is based on a regional, single-density ground-water flow model of coastal Georgia and adjacent parts of South Carolina and Florida. Variable-density ground-water flow and solute transport were simulated using the U.S. Geological Survey finite-element, variable-density solute-transport simulator SUTRA, 1885-2004. The model comprises seven layers: the surficial aquifer system, the Brunswick aquifer system, the Upper Floridan aquifer, the Lower Floridan aquifer, and the intervening confining units. The model was calibrated to September 1998 water levels, for single-density freshwater conditions, then refined using variable density and chloride concentration to give a reasonable match to the trend in the chloride distribution in the Upper Floridan aquifer inferred from field measurements of specific conductance made during 2000, 2002, 2003, and 2004. The model was modified to simulate solute transport by allowing saltwater to enter the system through localized areas near the northern end of Hilton Head Island, at Pinckney Island, and near the Colleton River, and was calibrated to match chloride concentrations inferred from field measurements of specific conductance. This simulation is called the 'Base Case.'

  16. Inferring spatial and temporal behavioral patterns of free-ranging manatees using saltwater sensors of telemetry tags

    Science.gov (United States)

    Castelblanco-Martínez, Delma Nataly; Morales-Vela, Benjamin; Slone, Daniel H.; Padilla-Saldívar, Janneth Adriana; Reid, James P.; Hernández-Arana, Héctor Abuid

    2015-01-01

    Diving or respiratory behavior in aquatic mammals can be used as an indicator of physiological activity and consequently, to infer behavioral patterns. Five Antillean manatees, Trichechus manatus manatus, were captured in Chetumal Bay and tagged with GPS tracking devices. The radios were equipped with a micropower saltwater sensor (SWS), which records the times when the tag assembly was submerged. The information was analyzed to establish individual fine-scale behaviors. For each fix, we established the following variables: distance (D), sampling interval (T), movement rate (D/T), number of dives (N), and total diving duration (TDD). We used logic criteria and simple scatterplots to distinguish between behavioral categories: ‘Travelling’ (D/T ≥ 3 km/h), ‘Surface’ (↓TDD, ↓N), ‘Bottom feeding’ (↑TDD, ↑N) and ‘Bottom resting’ (↑TDD, ↓N). Habitat categories were qualitatively assigned: Lagoon, Channels, Caye shore, City shore, Channel edge, and Open areas. The instrumented individuals displayed a daily rhythm of bottom activities, with surfacing activities more frequent during the night and early in the morning. More investigation into those cycles and other individual fine-scale behaviors related to their proximity to concentrations of human activity would be informative

  17. When the business of nursing was the nursing business: the private duty registry system, 1900-1940.

    Science.gov (United States)

    Whelan, Jean C

    2012-05-31

    In the initial decades of the 20th century, most nurses worked in the private sector as private duty nurses dependent on their own resources for securing and obtaining employment with individual patients. To organize and systematize the ways in which nurses sought jobs, a structure of private duty registries, agencies which connected nurses with patients, was established via professional nurse associations. This article describes the origins of the private duty nurse labor market as the main employment field for early nurses and ways in which the private duty registry system connected nurses and patients. The impact of professional nurses associations and two registries, (New York and Chicago) illustrates how the business of nursing was carried out, including registry formation, operation, and administration. Private duty nurses are compelling examples of a previous generation of nurse entrepreneurs. The discussion identifies problems and challenges of private nursing practice via registries, including the decline and legacy of this innovative nurse role. The story of early 20th century nurse owned and operated registries provides an early and critical historical illustration of the realization of nurse power, entrepreneurship, and control over professional practice that we still learn from today.

  18. Constraints and motivations related to fishing along the Lake Ontario coast

    Science.gov (United States)

    Matthew P. Brincka; Diane M. Kuehn; Valerie Luzadis

    2012-01-01

    The number of nonresident anglers along the Lake Ontario coast has decreased over the past 15 years. Therefore, in order to sustain a strong sport fishing industry, local businesses and tourism promoters might want to tap into the large resident angler market group. This study examines resident anglers' social, environmental, and economic constraints/facilitators...

  19. Feasibility of establishing an Australian ACL registry: a pilot study by the Australian Orthopaedic Association National Joint Replacement Registry (AOANJRR).

    Science.gov (United States)

    Lekkas, Christina; Clarnette, Richard; Graves, Stephen E; Rainbird, Sophia; Parker, David; Lorimer, Michelle; Paterson, Roger; Roe, Justin; Morris, Hayden; Feller, Julian A; Annear, Peter; Forster, Ben; Hayes, David

    2017-05-01

    Rupture of the anterior cruciate ligament (ACL) is a common and debilitating injury that impacts significantly on knee function and risks the development of degenerative arthritis. The outcome of ACL surgery is not monitored in Australia. The optimal treatment is unknown. Consequently, the identification of best practice in treating ACL is crucial to the development of improved outcomes. The Australian Knee Society (AKS) asked the Australian Orthopaedic Association (AOA) to consider establishing a national ACL registry. As a first step, a pilot study was undertaken by the Australian Orthopaedic Association National Joint Replacement Registry (AOANJRR) to test the hypothesis that collecting the required information in the Australian setting was possible. Surgeons completed an operative form which provided comprehensive information on the surgery undertaken. Patients provided pre- and post-operative questionnaires including the Knee Injury and Osteoarthritis Outcome Score (KOOS) and the Marx Activity Scale (MA Scale). The number of ACL procedures undertaken at each hospital during the recruitment period was compared against State Government Health Department separation data. A total of 802 patients were recruited from October 2011 to January 2013. The overall capture rate for surgeon-derived data was 99%, and the capture rate for the pre-operative patient questionnaire was 97.9%. At 6 months, patient-reported outcomes were obtained from 55% of patients, and 58.5% of patients at 12 months. When checked against State Government Health Department separation data, 31.3% of procedures undertaken at each study hospital were captured in the study. It is possible to collect surgeon-derived and pre-operative patient-reported data, following ACL reconstruction in Australia. The need to gain patient consent was a limiting factor to participation. When patients did consent to participate in the study, we were able to capture nearly 100% of surgical procedures. Patient consent

  20. The Danish National Prescription Registry

    DEFF Research Database (Denmark)

    Kildemoes, Helle Wallach; Toft Sørensen, Henrik; Hallas, Jesper

    2011-01-01

    Introduction: Individual-level data on all prescription drugs sold in Danish community pharmacies has since 1994 been recorded in the Register of Medicinal Products Statistics of the Danish Medicines Agency. Content: The register subset, termed the Danish National Prescription Registry (DNPR......), contains information on dispensed prescriptions, including variables at the level of the drug user, the prescriber, and the pharmacy. Validity and coverage: Reimbursement-driven record keeping, with automated bar-code-based data entry provides data of high quality, including detailed information...

  1. Danish Registry of Childhood and Adolescent Diabetes

    Directory of Open Access Journals (Sweden)

    Svensson J

    2016-10-01

    Full Text Available Jannet Svensson,1 Charlotte Cerqueira,2 Per Kjærsgaard,3 Lene Lyngsøe,4 Niels Thomas Hertel,5 Mette Madsen,6 Henrik B Mortensen,1 Jesper Johannesen1 1Pediatric and Adolescent Department, Copenhagen University Hospital, Herlev and Gentofte, Herlev, 2Registry Support Centre (East – Epidemiology and Biostatistics, Research Centre for Prevention and Health, Capital Region of Denmark, Glostrup, 3Pediatric Department, County Hospital Herning, Herning, 4Pediatric and Adolescent Department, Nordsjællands Hospital, Hillerød, 5HC Andersen Childrens Hospital, Odense University Hospital, Odense, 6Pediatric Department, Aalborg University Hospital, Aalborg, Denmark Aim: The aims of the Danish Registry of Childhood and Adolescent Diabetes (DanDiabKids are to monitor and improve the quality of care for children and adolescents with diabetes in Denmark and to follow the incidence and prevalence of diabetes. Study population: The study population consists of all children diagnosed with diabetes before the age of 15 years since 1996. Since 2015, every child followed up at a pediatric center (<18 years of age will be included. Main variables: The variables in the registry are the quality indicators, demographic variables, associated conditions, diabetes classification, family history of diabetes, growth parameters, self-care, and treatment variables. The quality indicators are selected based on international consensus of measures of good clinical practice. The indicators are metabolic control as assessed by HbA1c, blood pressure, albuminuria, retinopathy, neuropathy, number of severe hypoglycemic events, and hospitalization with ketoacidosis. Descriptive data: The number of children diagnosed with diabetes is increasing with ~3% per year mainly for type 1 diabetes (ie, 296 new patients <15 years of age were diagnosed in 2014. The disease management has changed dramatically with more children treated intensively with multiple daily injections, insulin pumps

  2. 78 FR 44625 - Proposed Information Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment...

    Science.gov (United States)

    2013-07-24

    ... DEPARTMENT OF VETERANS AFFAIRS Proposed Information Collection (Open Burn Pit Registry Airborne... to ``OMB Control No. 2900--NEW, Open Burn Pit Registry Airborne Hazard Self-Assessment Questionnaire... health effects of service members' exposure to toxic airborne chemicals and fumes caused by open burn...

  3. A Comprehensive evaluation of groundwater vulnerability to saltwater up-coning and sea water intrusion in a coastal aquifer (case study: Ghaemshahr-juybar aquifer)

    Science.gov (United States)

    Motevalli, Alireza; Moradi, Hamid Reza; Javadi, Saman

    2018-02-01

    Aquifer salinization has recently increased significantly due to human activity and has caused irreparable environmental and economic effects. In this research, a new method is proposed for modeling the vulnerability to salinity for the Ghaemshahr-juybar aquifer. Specifically, the GALDIT (Sea water intrusion) and TAWLBIC (Saltwater up-coning) indices were combined to produce a map of vulnerability (Comprehensive Salinity Index or CSI) to seawater intrusion of a region near the coast and saltwater up-coning away from the coast, respectively. Single parameter and removal layer sensitivity analysis were performed in order to identify the sensitive parameters and achieve optimal weights (through the single-parameter method) of contributing factors in all three methods. The three optimized methods produced were GALDIT-Opt, TAWLBIC-Opt and CSI-Opt. To assess the accuracy of the original maps and optimal ones, the Pearson correlation was used. Results indicated that the Pearson correlation of the optimized GALDIT, TAWLBIC and CSI model was better than GALDIT, TAWLBIC and CSI. The results show that the increase in correlation between EC (Electrical Conductivity), TDS (Total Dissolved Solids) and SAR (Sodium Adsorption Ratio) from the GALDIT model to the CSI-Opt model from values of 0.64, 0.56 and 0.68 has improved to values of 0.81, 0.88 and 0.91, respectively. The highest concentration of EC, with a value of 7050 μs/cm, is sampled in the areas of the east and northwest of the Ghaemshahr-juybar aquifer, which are classified in the CSI-Opt model as high and very high vulnerability levels. The highest concentration of TDS and SAR has been found in the east, northwest and northeast of the Ghaemshahr-juybar aquifer with a value of 4724 ppm for TDS and 14 mg/l for SAR that have been modeled in the CSI-Opt index as highly vulnerable areas. Eventually, CSI mapping can be used as an efficient tool in prioritizing in terms of the vulnerability to aquifer salinity, carrying out

  4. Demographic, clinical and antibody characteristics of patients with digital ulcers in systemic sclerosis: data from the DUO Registry

    NARCIS (Netherlands)

    Denton, Christopher P.; Krieg, Thomas; Guillevin, Loic; Schwierin, Barbara; Rosenberg, Daniel; Silkey, Mariabeth; Zultak, Maurice; Matucci-Cerinic, Marco; Stetter, M.; Lackner, K.; Tomi, N.; Hafner, F.; Brodmann, M.; Kuen-Spiegel, M.; Kolle, H.; Raffier, B.; Hamberger, N.; Metz, S.; Siebel, C.; Trummer, M.; Thonhofer, R.; Illmer, X.; Trautinger, F.; Schmidt, P.; Rintelen, B.; Sautner, J.; Willfort-Ehringer, A.; Margeta, C.; Monshi, B.; Pirkhammer, D.; Richter, L.; Holzer, G.; Minmair, G.; Broll, H.; Takacs, M.; Hirschl, M.; Mesaric, P.; Feldmann, R.; Semmelweis, K.; Hundstorfer, M.; Reinhart, V.; Maurer, B.; Verner, D.; Distler, O.; Schmidt-Bosshard, R.; Bohmova, J.; Prochazkova, L.; Nemec, P.; Fojtik, Z.; Soukup, T.; Smrzova, A.; Suchy, D.; Zemanova, I.; Becvar, R.; Gawlik, A.; Koch, M.; Rauen, T.; Voss, B.; Kurthen, R.; Unholzer, A.; Starz, H.; Welzel, J.; Plaumann, K.; Merk, B.; Bloching, H. H.; Moosig, F.; Frey, P.; Kahl, S.; Schleenbecker, H.; Storck-Mueller, K.; Schwarting, A.; Hazenbiller, A.; Nichelmann, V.; Flaig, W.; Rumbaur, C.; Boesenberg, I.; Schmeiser, T.; Marx, J.; Mayer, L.; Stein, T.; Ochs, W.; Rasche, C.; Worm, M.; Riemekasten, G.; Deuschle, K.; Becker, M.; Kleiner, H. J.; Schulze, K.; Tiggers, C.; Peters, J.; Kirschke, J.; Schaefer, C.; Monshausen, M.; Mengden, T.; Sadeghlar, F.; Seidel, M.; Hillebrecht, C.; Andresen, J.; Reemtsen, R.; Stoeckl, F.; Sperling, S.; Podda, M.; Wagner, N.; Guenzel, J.; Wuerzburg, I.; Luethke, K.; Enderlein, M.; Kayser, M.; Gerber, A.; Haust, M.; Hoff, N. P.; Mota, R.; Akanay-Diesel, S.; Jahnke, K.; Mettler, S.; Toeller, S.; Zwenger, S.; Klein, E.; Hahn, K.; Beyer, C.; Distler, J.; Katzemich, A.; Erfurt-berge, C.; Sticherling, M.; Schuch, F.; Rapp, P.; Mitchell, A.; Freundlieb, C.; Rushentsova, U.; Himsel, A.; Henkemeier, U.; Eilbacher, P.; Ullrich-Guenther, C.; Neul, S.; Oelsner, M.; Hermanns, G.; Fiene, M.; Gause, A.; Mensing, C.; Klings, D.; Mensing, H.; Messall, J.; Zuper, R.; May, D.; Bruckner, L.; Sheikh, N.; Aries, P.; Kirchberg, S.; Funkert, A.; Blank, N.; Lupaschko, S.; Schwuerzer-Voit, M.; Meier, L.; Herr, U.; Meier, U.; Neek, G.; Wernitzsch, H.; Pfoehler, C.; Assmann, G.; Vosswinkel, J.; Krog, B.; Wollersdorfer, E.; Oltmann-Schroeder, J.; Zeuner, R.; Uhlig, S.; Barth, S.; Huegel, R.; Glaeser, R.; Rabe, B.; Schuster, J.; Scholz, J.; Kremer, K.; Robakidze-Torbahn, M.; Moinzadeh, P.; Mittag, M.; Dohse, A.; Muhlack, A.; Schultz, L.; Schult, S.; Frambach, Y.; Kettenbach, A.; Fell, I.; Schweda, K.; Steinbrink, K.; Podobinska, M.; Harmuth, W.; Nielen, C.; Kaczmarczyk, A.; Kellner, C.; von Oelhafen, J.; von Bildering, P. B.; Kunze, S.; Niedermeier, A.; Messer, G.; Sardy, M.; Bekou, V.; Belloni, B.; Huettig, B.; Ziai, M.; Hein, R.; Hallecker, A.; Gaubitz, M.; Hallermann, C.; Schmidt, K.; Herrgott, I.; Hildebrandt, B.; Eiden, E.; Guertler, I.; Gernot Scheibl, E.; Brand, H.; Kaeding, U.; Weiss, E.; Reischel, N.; Kern, S.; Baumann, C.; Hellmich, B.; Loeffler, C.; Pflugfelder, J.; Karaenke, P.; Ruchenburg, J.; Blume, J.; Zabel, M.; Deppermann, N.; Chromik, S.; Metzler, C.; Krupp, E.; Rumpel, H.; Krause Rostock, J.-O.; Kneitz, C.; Federow, I.; Schneider, K.; Semmler, M.; Hapke, S.; Barnd, A.; Linke, M.; Kampe-Juzak, E.; Knoebel, K.; Niefanger, K.; Wilhelm, H. U.; Lauterwein, B.; Fierlbeck, G.; Schanz, S.; Pfeiffer, C.; Hassel, R.; Wahn, H.; Schildt, K.; von Elling, A.; Boro, D.; Ebel, J.; Ahmadi, K.; Moritz, D.; Dietl, S.; Dyballa, J.; Alsheimer, B.; Schuetz, N.; Schuart, T.; Mueglich, C.; Tony, H. P.; Marina, P.; Deininger, F.; Hartmann, F.; Olsen, A. B.; Sondergaard, K. H.; Naderi, Y.; Iversen, L. V.; Karlsmark, T.; Knudsen, J. B.; Gil, J. G.; Lopez, J. C. F.; Tasende, J. A. P.; Gonzales, M. F.; Sandoval, A. A.; del Carmen Torres Martin, M.; Corteguera, M.; Barca, B. A.; Montes, I. C.; de la Torre, R. G.; Victoria Egurbide, M.; Pros, A.; Munoz, J.; Simeon, C. P.; Espinosa, G.; Espinposa, G.; Rodriguez, M. A. P.; Castellvi, I.; Mascaro, J. M.; Bellido, D.; Manzanedo, V. S.; Huertas, M. P.; Sanchez, M. D. M.; Trenado, M. S. S.; Garcia, P. V.; Gines Martinez, F.; Angeles Aquirre, M.; del Rio, A. H.; Vazquez, J. L. G.; Coleman, J. V.; Lopez, M. R.; Sanchez, P. S.; Aizpuru, E. M. F.; Mateo, F. J. N.; Callejas, J. L.; Ortego, N.; Santo, M. P.; Rubio, M.; Martin, I.; Cruz, A.; Crespo, M.; Ramos, P. C.; Fernandez, A. S.-A.; Filloy, J. A. M.; Rodriguez, T. R. V.; Marhuenda, A. R.; Blanco, J. J. R.; Hernan, M. G. B.; Mendoza, A. Z.; de la Puente, C.; Rabaneda, E. V.; de Vicuna, R. G.; del Mar Ripoll Macias, M.; del la Pena Lefebvre, P. G.; de Ramon, E.; Camps, M. T.; Fernandez, C.; Miguelez, R.; Uson, J.; Delgado, E. G.; Villaverde, V.; Maceiras, F.; Cruz, J.; Mosquera, J. A.; Mera, A.; Pampin, E. P.; Blanco, J. S.; Maneiro, J. R.; Diaz, J. J.; Losada, L.; Caamano, M.; Fernandez, S.; Insua, S. A.; Laurin, C. U.; Sanchez, J.; Fernandez, N. C.; Becerra, N. D.; Garcia, A.; Nicolas, G. M.; del Carmen Ortega de la O, M.; Rueda, A.; Calvo, J.; Roman Ivorra, J.; Sancho Alegre, J. J.; Barbado, J.; Montes, J.; Saez, L.; Kaarto, A.; Makinen, H.; Madaule, S.; Dadban, A.; Lok, C.; Ferrandiz, D.; Moiton, M. P.; Magy-Bertrand, N.; Taieb, A.; Droitcourt, C.; Belin, E.; Balquiere, S.; Prey, S.; Boulon, C.; Constans, J.; Richez, C.; Sassolas, B.; Misery, L.; Greco, M.; collet, E.; Berthier, S.; Leguy-Seguin, V.; Imbert, B.; Carpentier, P.; Blaise, S.; Maillard, H.; Beneton, N.; Launay, D.; Hachulla, E.; Woijtasik, G.; Charlanne, H.; Lambert, M.; Jourdain, N.; Hatron, P. Y.; Morell, S.; Spars, A.; Couraud, A.; Doeffel-hantz, V.; Fauchais, A. L.; Vidal, E.; Goudran, G.; Bezanahary, H.; Boussely, N.; Manea, P.; Dumonteil, S.; Loustaud-ratti, V.; Hot, A.; Coppere, B.; Desmurs-Clavel, H.; Ninet, J.; Girard-Madoux, M. H.; Granel, B.; Keynote, A.; Khau van Kien, A.; Rullier, P.; Le Quellec, A.; Riviere, S.; Bessis, D.; Cohen, J. D.; Farcas, C.; Granel-brocard, F.; Agard, C.; Durant, C.; Fuzibet, J. G.; Queyrel, V.; Berezne, A.; Guillevin, L.; Mouthon, L.; Frances, C.; Toledano, C.; Cabane, J.; Tiev, K.; Farge, D.; Keshtmand, H.; Lazareth, I.; Priollet, P.; Michon-Pasturel, U.; Wipff, J.; Assous, N.; Cartry, O.; Kostrzwewa, E.; Doutre, M. S.; Blum, L.; Reguiai, Z.; Letremy, A.; Perlat, A.; Cazalets-lacoste, C.; Decaux, O.; Jego, P.; Duval-modeste, A. B.; Deboves, O.; Sordet, C.; Chatelus, E.; Chiffot, H.; Sibillia, J.; Couret, B.; Moulis, G.; Sailler, L.; Adoue, D.; Gaches, F.; Diot, E.; Skowron, F.; Zenone, T.; Quemeneur, T.; Kyndt, X.; Wahl, D.; Zuily, S.; Moline, T.; Bravetti, V.; Galanopoulos, N.; Vasilopoulos, D.; Vlachoyannopoulos, P.; Kritikos, I.; Tsifetaki, N.; Koutroumbas, A.; Garyfallos, A.; Athanassiou, P.; Aslanidis, S.; Kamali, S.; Dimitroulas, T.; Galanopoulo, V.; Elezoglou, A.; Grier, A.; Murray, M.; O'Rourke, M.; Gabrielli, A.; Lapadula, G.; Serafino, L.; Terlizzi, N.; Bellissimo, S.; Stisi, S.; Malavolta, N.; Airo, P.; Vacca, A.; Battaglia, E.; Foti, R.; Mazzuca, S.; Bortoluzzi, A.; Trotta, F.; Galluccio, F.; Marucci, A.; Cantatore, F.; Bucci, R.; Puppo, F.; de Angeli, R.; Grassi, W.; Cipriani, P.; Mazzone, A.; Faggioli, P.; Severino, A.; Scorza, R.; Belloli, L.; Ughi, N.; Antivalle, M.; del Papa, N.; Maglione, W.; Zeni, S.; Ferri, C.; Colaci, M.; Varcasia, G.; Cuomo, G.; Cozzi, F.; Triolo, G.; Gatti, S.; Montecucco, C. M.; Doveri, M.; Nigro, A.; Olivieri, I.; Bajoochi, G.; Rosato, E.; Salsano, F.; Faustini, F.; Ferraccioli, G.; Colonna, L.; Pallotta, S.; Riccieri, V.; Mussi, A.; Bellisai, F.; Galeazzi, M.; Fusaro, E.; Saracco, M.; Pellerito, R.; Masolini, P.; de Vita, S.; Lombardi, S.; Lunardi, C.; Moolenburgh, J. D.; Heurkens, A. H. M.; Voskuyl, A.; Hak, A. E.; Stroes, E. S. K.; Remans, J.; Gerdes, V.; van Woerkom, J. M.; de Long, A. J. L.; Kaasjager, H. A. H.; Visser, H.; Janssen, M.; van Guldener, C.; van Neer, F.; Vos, P.; Peters, A. J.; Hulsmans, H.; Ronday, K.; Goekoop, R.; Ewals, J.; Valentijn, R.; de Bois, M.; Westedt, M. L.; Siewertsz van Reesema, D.; Knifjj-Dutmer, E.; Stolk, J. N.; Willems, H.; Kuiper-geertsma, D. G.; Baudaoin, P.; Fretter, P.; Westra, R.; Sonnaville, P. B. J.; Smit, A.; Bootsma, H.; Brouwer, L.; Bijl, M.; Molders, N.; Lebrun, C.; van der Veen, M. J.; Noordzij, M.; Houben, H.; Landewe, R. M. B.; Vercoutere, W.; Jahangier de Veen, Z. N.; Zijlstra, T. R.; Ubels, F.; Bruyn, G.; Jansen, P.; Schuerwegh, A.; Huizinga, T. W. J.; Paassen, P.; Hurkens, T.; Geurts, M.; van den Hoogen, F.; Vonk, M.; Jacobs, P. J. C.; Groenendael, J. H. L. M.; Seys, P.; van Zeben, D.; van Paassen, H.; Groenendael, J.; Han, K. H.; Wlarvens, M.; van Hagen, M.; van Daele, P.; Dolhain, R.; Gerards, A. H.; van der Lubbe, P.; Kanter, M. D. E.; Muller, W. H.; Ton, E.; van Krugten, M.; van Gameren, I.; Lanting, P.; den Hengst, C.; Gjessdal, C. G.; Hjertaker, S. L.; Madland, T. M.; Bendvold, A.; Bitter, H.; Hoffmann-Vold, A. M.; Midtvedt, O.; Bakland, G.; Aslkaksen, H. K.; Seip, M.; Kalstad, S.; Koldingsnes, W.; Grandauent, B.; Nordvag, B. Y.; Stran, E. K.; Skomsvoll, J.; Andersen, M.; Thomsen, R. S.; Pedersen, T.; Bakkeheim, V.; Cordeiro, A.; Alves, J.; Oliveira, S.; Coelho, P.; Resende, C.; Ponte, C.; Almeida, I.; Silva, I.; Santos, C.; Camara, I.; Costa, J.; Hellstrom, H.; Mohammad, A.; Lind, I.; Lind, K.; Bracin, T.; Liljequist, E.; Vingren, T.; Ostenson, A.; Hermansson, E.; Thorsson, C.; Soderlin, M.; Nordin, A.; Waldheim, E.; Vengemyr, K.; Albertsson, K.; Karlsson, M. L.; Rydvald, Y.; Rizk, M.; Dolnicar, A. S.; Lukac, J.; James, J.; McHugh, N.; Cole, S.; Brown, S.; Hamilton, A.; Faizal, A.; Hall, F.; Murphy, K.; Skingle, S.; Harris, H.; Madhok, F.; Hampson, R.; Baguley, E.; Ogunbambi G, O.; Lamb, J.; Anderson, M.; Moots, R.; White-Alao, B.; Morrison, C.; Dobson, J.; Gordon, P.; Salerno, R.; Denton, C.; Parker, L.; Ochiel, R.; Vincent, R.; Zimba, S.; Ngcozana, T.; Xu, Y.; D'Cruz, D.; Choong, L. M.; Herrick, A.; Wragg, E.; Manning, J.; Moore, T.; Kelsey, C.; Chakravarty, K.; Skyes, H.; Athiveer, P.

    2012-01-01

    The Digital Ulcers Outcome (DUO) Registry was designed to describe the clinical and antibody characteristics, disease course and outcomes of patients with digital ulcers associated with systemic sclerosis (SSc). The DUO Registry is a European, prospective, multicentre, observational, registry of SSc

  5. EPA Facility Registry Service (FRS): Facility Interests Dataset Download

    Data.gov (United States)

    U.S. Environmental Protection Agency — This downloadable data package consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are...

  6. Melanoma of the skin in the Danish Cancer Registry and the Danish Melanoma Database

    DEFF Research Database (Denmark)

    Pedersen, Sidsel Arnspang; Schmidt, Sigrun Alba Johannesdottir; Klausen, Siri

    2018-01-01

    estimated the positive predictive value (PPV) of melanoma diagnosis for random samples of 200 patients from the Cancer Registry (n=200) and the Melanoma Database (n=200) during 2004-2014, using the Danish Pathology Registry as 'gold-standard' reference. We further validated tumor characteristics...

  7. Differences in Investigator-Initiated Trials between Japan and Other Countries: Analyses of Clinical Trials Sponsored by Academia and Government in the ClinicalTrials.gov Registry and in the Three Japanese Registries.

    Directory of Open Access Journals (Sweden)

    Tatsuya Ito

    Full Text Available Following the amendment of the Pharmaceutical Affairs Law in Japan in 2003 researchers were permitted to begin investigator-initiated trials (IITs. In subsequent years, however, the number of IITs remained low. In other countries in Asia as well as in Europe, North America, and South Africa, the number of IITs has increased over the past decade. The differences in the characteristics of IITs between Japan and other countries are unknown. Some studies have analyzed the characteristics of all clinical trials according to registry databases, but there has been less research focusing on IITs.The purpose of this study is to analyze the characteristics of IITs in the ClinicalTrials.gov registry and in the three Japanese registries, to identify differences in IITs between Japan and other countries.Using Thomson Reuters Pharma™, trials sponsored by academia and government as IITs in 2010 and registered in ClinicalTrials.gov were identified. IITs from 2004 to 2012 in Japan were identified in the three Japanese registries: the University Hospital Medical Information Network Clinical Trials Registry, the Japan Pharmaceutical Information Center Clinical Trials Information, and the Japan Medical Association Center for Clinical Trials, Clinical Trials Registry. Characterization was made of the trial purposes, phases, participants, masking, arms, design, controls, and other data.New and revised IITs registered in ClinicalTrials.gov during 2010 averaged about 40% of all sponsor-identified trials. IITs were nearly all early-phase studies with small numbers of participants. A total of 56 Japanese IITs were found over a period of 8 years, and these were also almost nearly all early-phase studies with small numbers of participants.There appear to be no great differences between Japan and other countries in terms of characteristics of IITs. These results should prompt a new review of the IIT environment in Japan.

  8. 78 FR 6853 - Agency Information Collection (Agent Orange Registry Code Sheet) Activities Under OMB Review

    Science.gov (United States)

    2013-01-31

    ... able to notify Vietnam era veterans who served in the Republic of Vietnam of any increased health risks...-related registry administrated by VA that is similar to the Persian Gulf War Veterans Health Registry...

  9. BioShaDock: a community driven bioinformatics shared Docker-based tools registry [version 1; referees: 2 approved

    Directory of Open Access Journals (Sweden)

    François Moreews

    2015-12-01

    Full Text Available Linux container technologies, as represented by Docker, provide an alternative to complex and time-consuming installation processes needed for scientific software. The ease of deployment and the process isolation they enable, as well as the reproducibility they permit across environments and versions, are among the qualities that make them interesting candidates for the construction of bioinformatic infrastructures, at any scale from single workstations to high throughput computing architectures. The Docker Hub is a public registry which can be used to distribute bioinformatic software as Docker images. However, its lack of curation and its genericity make it difficult for a bioinformatics user to find the most appropriate images needed. BioShaDock is a bioinformatics-focused Docker registry, which provides a local and fully controlled environment to build and publish bioinformatic software as portable Docker images. It provides a number of improvements over the base Docker registry on authentication and permissions management, that enable its integration in existing bioinformatic infrastructures such as computing platforms. The metadata associated with the registered images are domain-centric, including for instance concepts defined in the EDAM ontology, a shared and structured vocabulary of commonly used terms in bioinformatics. The registry also includes user defined tags to facilitate its discovery, as well as a link to the tool description in the ELIXIR registry if it already exists. If it does not, the BioShaDock registry will synchronize with the registry to create a new description in the Elixir registry, based on the BioShaDock entry metadata. This link will help users get more information on the tool such as its EDAM operations, input and output types. This allows integration with the ELIXIR Tools and Data Services Registry, thus providing the appropriate visibility of such images to the bioinformatics community.

  10. [The significance of introducing registry study in the post-marketing safety research for Chinese medicine and pharmacy].

    Science.gov (United States)

    Liao, Xing; Xie, Yan-Ming; Yang, Wei; Chang, Yan-Peng

    2014-03-01

    There is a new research model named 'registry study/patient registry' in Western medicine, which could be referred to by Chinese medicine researchers, such as active safety surveillance. This article will introduce registry study from different aspects as the developing history, features, and application in order to inform Chinese medicine researchers of future studies.

  11. Airborne Hazards and Open Burn Pit Registry

    Science.gov (United States)

    ... this problem if you are in a high security environment where this is disabled by a network policy. The Registry will work in JavaScript-enabled browsers such as: Google Chrome 17+ Mozilla Firefox 12+ Internet Explorer 10+ Safari 5+ Safari iOS 5+ Android 2.3+ If you are using a compatible ...

  12. Establishing a Twin Registry in Guinea-Bissau

    DEFF Research Database (Denmark)

    Bjerregaard-Andersen, Morten; Gomes, Margarida A; Joaquím, Luis C

    2013-01-01

    represent a powerful tool. Though twin studies have been carried out by the Bandim Health Project for more than 30 years, the renewed registry described here was officially established in 2009 and includes both a cohort of newborn twins and a cohort of young and adult twins. Currently more than 1,500 twins...

  13. Developing a caries risk registry to support caries risk assessment and management for children: A quality improvement initiative.

    Science.gov (United States)

    Ruff, Jesley C; Herndon, Jill Boylston; Horton, Roger A; Lynch, Julie; Mathwig, Dawn C; Leonard, Audra; Aravamudhan, Krishna

    2017-10-27

    Health registries are commonly used in medicine to support public health activities and are increasingly used in quality improvement (QI) initiatives. Illustrations of dental registries and their QI applications are lacking. Within dentistry, caries risk assessment implementation and documentation are vital to optimal patient care. The purpose of this article is to describe the processes used to develop a caries risk assessment registry as a QI initiative to support clinical caries risk assessment, caries prevention, and disease management for children. Developmental steps reflected Agency for Healthcare Research and Quality recommendations for planning QI registries and included engaging "champions," defining the project, identifying registry features, defining performance dashboard indicators, and pilot testing with participant feedback. We followed Standards for Quality Improvement Reporting Excellence guidelines. Registry eligibility is patients aged 0-17 years. QI tools include prompts to register eligible patients; decision support tools grounded in evidence-based guidelines; and performance dashboard reports delivered at the provider and aggregated levels at regular intervals. The registry was successfully piloted in two practices with documented caries risk assessment increasing from 57 percent to 92 percent and positive feedback regarding the potential to improve dental practice patient centeredness, patient engagement and education, and quality of care. The caries risk assessment registry demonstrates how dental registries may be used in QI efforts to promote joint patient and provider engagement, foster shared decision making, and systematically collect patient information to generate timely and actionable data to improve care quality and patient outcomes at the individual and population levels. © 2017 American Association of Public Health Dentistry.

  14. Maternal Fish Consumption and Infant Birth Size and Gestation: New York State Angler Cohort Study

    Directory of Open Access Journals (Sweden)

    Weiner John M

    2003-06-01

    Full Text Available Abstract Background The scientific literature poses a perplexing dilemma for pregnant women with respect to the consumption of fish from natural bodies of water. On one hand, fish is a good source of protein, low in fat and a rich source of other nutrients all of which have presumably beneficial effects on developing embryos and fetuses. On the other hand, consumption of fish contaminated with environmental toxicants such as polychlorinated biphenyls (PCBs has been associated with decrements in gestation and birth size. Methods 2,716 infants born between 1986–1991 to participants of the New York State Angler Cohort Study were studied with respect to duration of maternal consumption of contaminated fish from Lake Ontario and its tributaries and gestation and birth size. Hospital delivery records (maternal and newborn were obtained for 92% of infants for the ascertainment of gestation (weeks, birth size (weight, length, chest, and head circumference and other known determinants of fetal growth (i.e., maternal parity, history of placental infarction, uterine bleeding, pregnancy loss or cigarette smoking and infant's race, sex and presence of birth defect. Duration of maternal fish consumption prior to the index infant's birth was categorized as: none; 1–2, 3–7, 8+ years, while birth weight (in grams, birth length (in centimeters, and head and chest circumference (in centimeters were left as continuous variables in multiple linear regression models. Birth size percentiles, ponderal indices and head to chest circumference ratios were computed to further assess proportionality and birth size in relation to gestational age. Results Analysis of variance failed to identify significant mean differences in gestation or any measure of birth size in relation to duration of maternal lifetime fish consumption. Multiple linear regressions identified gestational age, male sex, number of daily cigarettes, parity and placental infarction, as significant

  15. 78 FR 33894 - Proposed Information Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment...

    Science.gov (United States)

    2013-06-05

    ... chemicals and fumes caused by open burn pits. DATES: Written comments and recommendations on the proposed... to ``OMB Control No. 2900-NEW, Open Burn Pit Registry Airborne Hazard Self-Assessment Questionnaire.... Title: Open Burn Pit Registry Airborne Hazard Self-Assessment Questionnaire, VA Form 10-10066. OMB...

  16. 78 FR 54956 - Agency Information Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment...

    Science.gov (United States)

    2013-09-06

    ...: Open Burn Pit Registry Airborne Hazard Self-Assessment Questionnaire, VA Form 10-10066. Type of Review... services to Open Burn Pit Registry participants and improve VA's ability to understand the health effects... DEPARTMENT OF VETERANS AFFAIRS [OMB Control No. 2900-NEW] Agency Information Collection (Open Burn...

  17. EPA Facility Registry Service (FRS): Facility Interests Dataset - Intranet

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are available in...

  18. The Danish Heart Failure Registry

    DEFF Research Database (Denmark)

    Schjødt, Inge; Nakano, Anne; Egstrup, Kenneth

    2016-01-01

    AIM OF DATABASE: The aim of the Danish Heart Failure Registry (DHFR) is to monitor and improve the care of patients with incident heart failure (HF) in Denmark. STUDY POPULATION: The DHFR includes inpatients and outpatients (≥18 years) with incident HF. Reporting to the DHFR is mandatory......: The main variables recorded in the DHFR are related to the indicators for quality of care in patients with incident HF: performance of echocardiography, functional capacity (New York Heart Association functional classification), pharmacological therapy (angiotensin converting enzyme/angiotensin II...

  19. Systematic Reviews Published in Emergency Medicine Journals Do Not Routinely Search Clinical Trials Registries: A Cross-Sectional Analysis.

    Science.gov (United States)

    Keil, Lukas G; Platts-Mills, Timothy F; Jones, Christopher W

    2015-10-01

    Publication bias compromises the validity of systematic reviews. This problem can be addressed in part through searching clinical trials registries to identify unpublished studies. This study aims to determine how often systematic reviews published in emergency medicine journals include clinical trials registry searches. We identified all systematic reviews published in the 6 highest-impact emergency medicine journals between January 1 and December 31, 2013. Systematic reviews that assessed the effects of an intervention were further examined to determine whether the authors described searching a clinical trials registry and whether this search identified relevant unpublished studies. Of 191 articles identified through PubMed search, 80 were confirmed to be systematic reviews. Our sample consisted of 41 systematic reviews that assessed a specific intervention. Eight of these 41 (20%) searched a clinical trials registry. For 4 of these 8 reviews, the registry search identified at least 1 relevant unpublished study. Systematic reviews published in emergency medicine journals do not routinely include searches of clinical trials registries. By helping authors identify unpublished trial data, the addition of registry searches may improve the validity of systematic reviews. Copyright © 2014 American College of Emergency Physicians. Published by Elsevier Inc. All rights reserved.

  20. Using an International Clinical Registry of Regional Anesthesia to Identify Targets for Quality Improvement

    Science.gov (United States)

    Sites, Brian D.; Barrington, Michael J.; Davis, Matthew

    2014-01-01

    Background Despite the widespread use of regional anesthesia, limited information on clinical performance exists. Institutions, therefore, have little knowledge of how they are performing in regards to both safety and effectiveness. In this study, we demonstrate how a medical institution (or physician/physician group) may use data from a multi-center clinical registry of regional anesthesia to inform quality improvement strategies. Methods We analyzed data from the International Registry of Regional Anesthesia that includes prospective data on peripheral regional anesthesia procedures from 19 centers located around the world. Using data from the clinical registry, we present summary statistics of the overall safety and effectiveness of regional anesthesia. Furthermore, we demonstrate, using a variety of performance measures, how these data can be used by hospitals to identify areas for quality improvement. To do so, we compare the performance of one member institution (a United States medical center in New Hampshire) to that of the other 18 member institutions of the clinical registry. Results The clinical registry contained information on 23,271 blocks that were performed between June 1, 2011, and May 1, 2014, on 16,725 patients. The overall success rate was 96.7%, immediate complication rate was 2.2%, and the all-cause 60-day rate of neurological sequelae was 8.3 (95% CI, 7.2–9.7) per 10,000. Registry wide major hospital events included 7 wrong site blocks, 3 seizures, 1 complete heart block, 1 retroperitoneal hematoma, and 3 pneumothoraces. For our reference medical center, we identified areas meriting quality improvement. Specifically, after accounting for differences in the age, sex, and health status of patient populations, the reference medical center appeared to rely more heavily on opioids for post procedure management, had higher patient pain scores, and experienced delayed discharge when compared with other member institutions. Conclusions To our

  1. Defining incidental perineural invasion: the need for a national registry.

    Science.gov (United States)

    Buchanan, Lauren; De'Ambrosis, Brian; DeAmbrosis, Kathryn; Warren, Timothy; Huilgol, Shyamala; Soyer, H Peter; Panizza, Benedict

    2014-05-01

    This article by the Perineural Invasion (PNI) Registry Group aims to clarify clinical and histopathological ambiguities surrounding PNI in non-melanoma skin cancer (NMSC). PNI is reportedly present in approximately 2-6% of cases of NMSC and is associated with greater rates of morbidity and mortality. The distinction between clinical PNI and incidental PNI is somewhat unclear, especially in regard to management and prognosis. One important objective of the PNI Registry is to develop a standardised method of classifying perineural invasion. Hence, in this article we propose a definition for PNI and for its sub-classification. This article also provides a critical analysis of the current literature on the treatment of incidental PNI by evaluating the key cohort studies that have investigated the use of surgery or radiotherapy in the management of incidental PNI. At present, there are no universal clinical guidelines that specify the acceptable treatment of NMSC exhibiting incidental PNI. Consequently, patients often receive surgery with varying wider margins, or radiotherapy despite the limited evidence substantiating such management options. It is evident from the existing literature that current opinion is divided over the benefit of adjuvant radiotherapy. Certain prognostic factors have been proposed, such as the size and depth of tumour invasion, nerve diameter, the presence of multifocal PNI and the type of tumour. The PNI Registry is a web-based registry that has been developed to assist in attaining further data pertaining to incidental PNI in NMSC. It is envisaged that this information will provide the foundation for identifying and defining best practice in managing incidental PNI. © 2013 The Australasian College of Dermatologists.

  2. The patient registry: a high-impact tool for real world evidence

    Directory of Open Access Journals (Sweden)

    BarickUttam, MohantyRituraj, GowdaArun

    2014-11-01

    Full Text Available Background: In this world of seemingly infinite data across domains, one strives to acquire better tools and methodologies to fully exploit available data. This process begins with meticulous planning to gather relevant information and continues until there is an output in the form of credible evidence. The ability to generate real-world evidence would take such a process to new level: the factors that influence these processes under real-world conditions are varied, unpredictable, and unregulated. Results obtained in highly regulated or controlled conditions are universally accepted and sought after for regulatory approvals, but performance indicators in the real world will set the tone for the future. Hence, the demands for very reliant and robust tools and mechanisms for gathering evidence are all the more prominent and necessary. Patient registries fill this gap and stand tall among the various tools that could deliver the desired end results with acceptable accuracy. Over the years, pharmaceutical companies, along with policymakers and other stakeholders, have been actively involved in the development of such registries. Aims: Here we provide an overview of the usefulness of registries for the various stakeholders in healthcare in terms of conduct, approach, and barriers to initiating such studies. Conclusion: One of the impediments for the wider appeal and utility of registries is low awareness among the public and policymakers. Incorporating them as a part of the standard global healthcare system would involve setting up a regulatory framework.

  3. National registry of hemoglobinopathies in Spain (REPHem).

    Science.gov (United States)

    Cela, Elena; Bellón, José M; de la Cruz, María; Beléndez, Cristina; Berrueco, Rubén; Ruiz, Anna; Elorza, Izaskun; Díaz de Heredia, Cristina; Cervera, Aurea; Vallés, Griselda; Salinas, J Antonio; Coll, M Teresa; Bermúdez, Mar; Prudencio, Marta; Argilés, Bienvenida; Vecilla, Cruz

    2017-07-01

    Although highly prevalent throughout the world, the accurate prevalence of hemoglobinopathies in Spain is unknown. This study presents data on the national registry of hemoglobinopathies of patients with thalassemia major (TM), thalassemia intermedia (TI), and sickle cell disease (SCD) in Spain created in 2014. Fifty centers reported cases retrospectively. Data were registered from neonatal screening or from the first contact at diagnosis until last follow-up or death. Data of the 715 eligible patients were collected: 615 SCD (497 SS, 64 SC, 54 SBeta phenotypes), 73 thalassemia, 9 CC phenotype, and 18 other variants. Most of the SCD patients were born in Spain (65%), and 51% of these were diagnosed at newborn screening. Median age at the first diagnosis was 0.4 years for thalassemia and 1.0 years for SCD. The estimated incidence was 0.002 thalassemia cases and 0.03 SCD cases/1,000 live births. Median age was 8.9 years (0.2-33.7) for thalassemia and 8.1 years (0.2-32.8) for SCD patients. Stroke was registered in 16 SCD cases. Transplantation was performed in 43 TM and 23 SCD patients at a median age of 5.2 and 7.8 years, respectively. Twenty-one patients died (3 TM, 17 SCD, 1 CC) and 200 were lost to follow-up. Causes of death were related to transplantation in three patients with TM and three patients with SCD. Death did not seem to be associated with SCD in six patients, but nine patients died secondary to disease complications. Overall survival was 95% at 15 years of age. The registry provides data about the prevalence of hemoglobinopathies in Spain and will permit future cohort studies and the possibility of comparison with other registries. © 2016 Wiley Periodicals, Inc.

  4. The Medical Birth Registry of Norway – An international perspective

    Directory of Open Access Journals (Sweden)

    Allen J. Wilcox

    2007-01-01

    Full Text Available Some of the most practical questions of perinatal medicine are regarding couples who have had pregnancy problems in the past, and their risk of having such problems in future pregnancies. For example, if a couple has a child with a birth defect, what are their chances that their next child will have a defect? The key to answering such questions is the availability of linked data such as those provided by the Medical Birth Registry of Norway. Such linked data provide a unique resource for addressing a broad range of questions in perinatal epidemiology. The Medical Birth Registry of Norway has been a pioneer in answering such questions.

  5. The Medical Birth Registry of Norway – An international perspective

    Directory of Open Access Journals (Sweden)

    Allen J. Wilcox

    2009-10-01

    Full Text Available Some of the most practical questions of perinatal medicine are regarding couples who have had pregnancy problems in the past, and their risk of having such problems in future pregnancies. For example, if a couple has a child with a birth defect, what are their chances that their next child will have a defect? The key to answering such questions is the availability of linked data such as those provided by the Medical Birth Registry of Norway. Such linked data provide a unique resource for addressing a broad range of questions in perinatal epidemiology. The Medical Birth Registry of Norway has been a pioneer in answering such questions

  6. EPA Facility Registry Service (FRS): ALL FRS INTERESTS LAYER

    Data.gov (United States)

    U.S. Environmental Protection Agency — This data provides location and attribute information on all facilities in EPA's Facility Registry Service (FRS) for a internet web feature service . The FRS is an...

  7. Developing the Safety of Atrial Fibrillation Ablation Registry Initiative (SAFARI) as a collaborative pan-stakeholder critical path registry model: a Cardiac Safety Research Consortium "Incubator" Think Tank.

    Science.gov (United States)

    Al-Khatib, Sana M; Calkins, Hugh; Eloff, Benjamin C; Kowey, Peter; Hammill, Stephen C; Ellenbogen, Kenneth A; Marinac-Dabic, Danica; Waldo, Albert L; Brindis, Ralph G; Wilbur, David J; Jackman, Warren M; Yaross, Marcia S; Russo, Andrea M; Prystowsky, Eric; Varosy, Paul D; Gross, Thomas; Pinnow, Ellen; Turakhia, Mintu P; Krucoff, Mitchell W

    2010-10-01

    Although several randomized clinical trials have demonstrated the safety and efficacy of catheter ablation of atrial fibrillation (AF) in experienced centers, the outcomes of this procedure in routine clinical practice and in patients with persistent and long-standing persistent AF remain uncertain. Brisk adoption of this therapy by physicians with diverse training and experience highlights potential concerns regarding the safety and effectiveness of this procedure. Some of these concerns could be addressed by a national registry of AF ablation procedures such as the Safety of Atrial Fibrillation Ablation Registry Initiative that was initially proposed at a Cardiac Safety Research Consortium Think Tank meeting in April 2009. In January 2010, the Cardiac Safety Research Consortium, in collaboration with the Duke Clinical Research Institute, the US Food and Drug Administration, the American College of Cardiology, and the Heart Rhythm Society, held a follow-up meeting of experts in the field to review the construct and progress to date. Other participants included the National Heart, Lung, and Blood Institute; the Centers for Medicare and Medicaid Services; the Agency for Healthcare Research and Quality; the AdvaMed AF working group; and additional industry representatives. This article summarizes the discussions that occurred at the meeting of the state of the Safety of Atrial Fibrillation Ablation Registry Initiative, the identification of a clear pathway for its implementation, and the exploration of solutions to potential issues in the execution of this registry. Copyright © 2010 Mosby, Inc. All rights reserved.

  8. Clinical registry for rheumatoid arthritis; a preliminary analysis

    International Nuclear Information System (INIS)

    Fakhr, A.; Hakim, F.; Zaidi, S.K.; Sharif, A.

    2017-01-01

    To establish a clinical registry for Rheumatoid Arthritis and delineate the most common symptoms that rheumatoid arthritis (RA) patients experience in our set up. Study Design: Cross sectional study. Place and Duration of Study: Study was carried out at Military Hospital (MH) Rawalpindi at Rheumatology Department during the period of Jan 2013 to Jun 2015. Material and Methods: A clinical registry for Rheumatoid Arthritis was developed as per criteria jointly developed by American College of Rheumatology (ACR) along with European League against Rheumatism (EULAR) (2010). Fifty-eight patients were registered after their informed consent and approval by Military Hospital (MH) Rawalpindi ethical committee. Age, gender and relevant clinical parameters of RA patients were recorded on case report forms and stored for analysis in the RA registry in Excel 2010. The figures were reported in frequencies and percentages. Results: Multiple joint pains (48.28%), fever (24.14%), morning stiffness of joints (22.41%) were the most common symptoms in RA patients. Other clinical manifestations included painful bilateral swollen joints (13.79%), pain in different parts of the body (10.34%), Raynaud's phenomenon (10.34%), malaise (8.62%), swollen body parts (8.62%), ulcers (8.62%), fatigue (6.90%), nodules on skin/elbow/interphalangeal joints (6.90%), deformities of fingers/ hand (3.45%), redness of eyes (3.45%), body rash (3.45%), inability to walk (3.45%), cervical lymphadenopathy (1.72%), stiffness of spine (1.72%) and myalgias (1.72%). Conclusion: It is concluded that multiple joint pains, fever and morning stiffness of joints are the most common symptoms of RA patients. (author)

  9. The Danish Neuro-Oncology Registry

    DEFF Research Database (Denmark)

    Hansen, Steinbjørn

    2016-01-01

    AIM OF DATABASE: The Danish Neuro-Oncology Registry (DNOR) was established by the Danish Neuro-Oncology Group as a national clinical database. It was established for the purpose of supporting research and development in adult patients with primary brain tumors in Denmark. STUDY POPULATION: DNOR has...... advantage of reporting indicators is the related multidisciplinary discussions giving a better understanding of what actually is going on, thereby facilitating the work on adjusting the national guidelines in the Danish Neuro-Oncology Group. CONCLUSION: The establishment of DNOR has optimized the quality...

  10. Medical Dosimetric Registry of Russian Atomic Industry Employees: Current Status and Perspectives

    International Nuclear Information System (INIS)

    Ilyin, L. A.; Kiselev, M. F.; Panfilov, A. P.; Kochetkov, O. A.; Ivanov, A. A.; Grinev, M. P.; Soloviev, V. Y.; Semenov, V. G.; Tukov, A. R.; Koshuurnikova, N. A.; Takhauov, R. M.; Melnikov, G. Y.

    2004-01-01

    Epidemiological studies of nuclear industry personnel contain the significant abilities to assess the prolonged radiation exposure effects in the human health. The clarification of these assessments and following improvements of the scientific justification of radiation regulation require the expansion of factual basis of the research currently, Branch Medical Dosimetric Registry (BMDR) of atomic industry and nuclear power employees is under the development in Russian to compose a number of regional registries. This work is coordinated by the State Research Center- Institute of Biophysics (Moscow). The first phase of this project was devoted to the forming of the regional registry of Mayak PA employees (Ozersk, South Uranl region). the employee registries of Siberian Chemical Plant (SCP, Seversk, Tomsk region) and Mountain Chemical Plant (MCP, Zheleznogorsk, Krasnoyarsk region) are at the finalization. At later phases, BMDR will be added by the information on other enterprises and on operating NPP too. The paper describes the structure, general issues of the forming and current status of BMDR. The comparison of major BMDR features versus LSS registry (which is the one of basic components for international radiation protection recommendations and current radiation protection standards) demonstrates that BMDR information can be more preferable to assess the significance of the man made radiation at high and intermediate dose ranges. Particularly, the number of employees (20-40 year age range) exposed to doses specific to detectable radiation health effects (above 2000 mSv) is almost ten times more than that for LSS cohort. Besides, the health monitoring was elaborated since the employment start point (Whereas, since year 5 for LSS cohort). BMDR dose records were measured (against LSS reconstructed doses) and the employee exposure duration was equal to years and decade (alternatively to momentary exposure recorded in LSS). BMDR data quantity and quality correspond to

  11. Temporal Trends in the Risk Profile of Patients Undergoing Outpatient Percutaneous Coronary Intervention: A Report from the National Cardiovascular Data Registry's CathPCI Registry.

    Science.gov (United States)

    Vora, Amit N; Dai, Dadi; Gurm, Hitinder; Amin, Amit P; Messenger, John C; Mahmud, Ehtisham; Mauri, Laura; Wang, Tracy Y; Roe, Matthew T; Curtis, Jeptha; Patel, Manesh R; Dauerman, Harold L; Peterson, Eric D; Rao, Sunil V

    2016-03-01

    Because of recent changes in criteria for coverage for inpatient hospital stays, most nonacute percutaneous coronary intervention (PCI) procedures are reimbursed on an outpatient basis regardless of underlying patient risk. Downstream effects of these changes on the risk profile of patients undergoing outpatient PCI have not been evaluated. Using the American College of Cardiology National Cardiovascular Data Registry's CathPCI Registry, we assessed temporal trends in risk profiles and rates of hospital admission among 999 279 patients undergoing PCI qualifying for outpatient reimbursement. We estimated mortality and bleeding risk using validated models from the registry. From 2009 to 2014, the proportion of outpatients not admitted to a hospital after PCI increased from 32.8% to 66.3% (Prisk for predicted mortality increased significantly from 17.0% to 19.8% during the study period (Prisk for mortality. Among patients undergoing PCI procedures that qualify for outpatient reimbursement, there has been a temporal decrease in postprocedure hospital admission. Concomitantly, the proportion of these outpatients at high risk for mortality has significantly increased over time. These data suggest that current reimbursement classification could be improved by incorporating patient risk to appropriately match the necessary resources to the needed level of care. © 2016 American Heart Association, Inc.

  12. Simulation of saltwater intrusion in a poorly karstified coastal aquifer in Lebanon (Eastern Mediterranean)

    Science.gov (United States)

    Khadra, Wisam M.; Stuyfzand, Pieter J.

    2018-03-01

    To date, there has been no agreement on the best way to simulate saltwater intrusion (SWI) in karst aquifers. An equivalent porous medium (EPM) is usually assumed without justification of its applicability. In this paper, SWI in a poorly karstified aquifer in Lebanon is simulated in various ways and compared to measurements. Time series analysis of rainfall and aquifer response is recommended to decide whether quickflow through conduits can be safely ignored. This aids in justifying the selection of the exemplified EPM model. To examine the improvement of SWI representation when discrete features (DFs) are embedded in the model domain, the results of a coupled discrete-continuum (CDC) approach (a hybrid EPM-DF approach) are compared to the EPM model. The two approaches yielded reasonable patterns of hydraulic head and groundwater salinity, which seem trustworthy enough for management purposes. The CDC model also reproduced some local anomalous chloride patterns, being more adaptable with respect to the measurements. It improved the overall accuracy of salinity predictions at wells and better represented the fresh-brackish water interface. Therefore, the CDC approach can be beneficial in modeling SWI in poorly karstified aquifers, and should be compared with the results of the EPM method to decide whether the differences in the outcome at local scale warrant its (more complicated) application. The simulation utilized the SEAWAT code since it is density dependent and public domain, and it enjoys widespread application. Including DFs necessitated manual handling because the selected code has no built-in option for such features.

  13. [The Murcia Twin Registry. A resource for research on health-related behaviour].

    Science.gov (United States)

    Ordoñana, Juan R; Sánchez Romera, Juan F; Colodro-Conde, Lucía; Carrillo, Eduvigis; González-Javier, Francisca; Madrid-Valero, Juan J; Morosoli-García, José J; Pérez-Riquelme, Francisco; Martínez-Selva, José M

    Genetically informative designs and, in particular, twin studies, are the most widely used methodology to analyse the relative contribution of genetic and environmental factors to inter-individual variability. These studies basically compare the degree of phenotypical similarity between monozygotic and dizygotic twin pairs. In addition to the traditional estimate of heritability, this kind of registry enables a wide variety of analyses which are unique due to the characteristics of the sample. The Murcia Twin Registry is population-based and focused on the analysis of health-related behaviour. The observed prevalence of health problems is comparable to that of other regional and national reference samples, which guarantees its representativeness. Overall, the characteristics of the Registry facilitate developing various types of research as well as genetically informative designs, and collaboration with different initiatives and consortia. Copyright © 2016 SESPAS. Publicado por Elsevier España, S.L.U. All rights reserved.

  14. The Registry of Knowledge Translation Methods and Tools: a resource to support evidence-informed public health.

    Science.gov (United States)

    Peirson, Leslea; Catallo, Cristina; Chera, Sunita

    2013-08-01

    This paper examines the development of a globally accessible online Registry of Knowledge Translation Methods and Tools to support evidence-informed public health. A search strategy, screening and data extraction tools, and writing template were developed to find, assess, and summarize relevant methods and tools. An interactive website and searchable database were designed to house the registry. Formative evaluation was undertaken to inform refinements. Over 43,000 citations were screened; almost 700 were full-text reviewed, 140 of which were included. By November 2012, 133 summaries were available. Between January 1 and November 30, 2012 over 32,945 visitors from more than 190 countries accessed the registry. Results from 286 surveys and 19 interviews indicated the registry is valued and useful, but would benefit from a more intuitive indexing system and refinements to the summaries. User stories and promotional activities help expand the reach and uptake of knowledge translation methods and tools in public health contexts. The National Collaborating Centre for Methods and Tools' Registry of Methods and Tools is a unique and practical resource for public health decision makers worldwide.

  15. Integrated image data and medical record management for rare disease registries. A general framework and its instantiation to theGerman Calciphylaxis Registry.

    Science.gov (United States)

    Deserno, Thomas M; Haak, Daniel; Brandenburg, Vincent; Deserno, Verena; Classen, Christoph; Specht, Paula

    2014-12-01

    Especially for investigator-initiated research at universities and academic institutions, Internet-based rare disease registries (RDR) are required that integrate electronic data capture (EDC) with automatic image analysis or manual image annotation. We propose a modular framework merging alpha-numerical and binary data capture. In concordance with the Office of Rare Diseases Research recommendations, a requirement analysis was performed based on several RDR databases currently hosted at Uniklinik RWTH Aachen, Germany. With respect to the study management tool that is already successfully operating at the Clinical Trial Center Aachen, the Google Web Toolkit was chosen with Hibernate and Gilead connecting a MySQL database management system. Image and signal data integration and processing is supported by Apache Commons FileUpload-Library and ImageJ-based Java code, respectively. As a proof of concept, the framework is instantiated to the German Calciphylaxis Registry. The framework is composed of five mandatory core modules: (1) Data Core, (2) EDC, (3) Access Control, (4) Audit Trail, and (5) Terminology as well as six optional modules: (6) Binary Large Object (BLOB), (7) BLOB Analysis, (8) Standard Operation Procedure, (9) Communication, (10) Pseudonymization, and (11) Biorepository. Modules 1-7 are implemented in the German Calciphylaxis Registry. The proposed RDR framework is easily instantiated and directly integrates image management and analysis. As open source software, it may assist improved data collection and analysis of rare diseases in near future.

  16. An evolution of trauma care evaluation: A thesis on trauma registry and outcome prediction models

    NARCIS (Netherlands)

    Joosse, P.

    2013-01-01

    Outcome prediction models play an invaluable role in the evaluation and improvement of modern trauma care. Trauma registries underlying these outcome prediction models need to be accurate, complete and consistent. This thesis focused on the opportunities and limitations of trauma registries and

  17. Registry Evaluation of Digital Ulcers in Systemic Sclerosis

    Directory of Open Access Journals (Sweden)

    Felice Galluccio

    2010-01-01

    Full Text Available Digital ulcers are a very frequent complication of systemic sclerosis affecting about half of the SSc patients, and about 75% of the affected patients have their first DU episode within 5 years from their first non-Raynaud symptom. The lack of adequate classification criteria as well as the lack of knowledge of the development of DU have contributed to the opening of specific registries to better understand the natural history of these lesions. For these reason, specific disease registries play a fundamental role in this field of research. Thanks to the systematic collection of data and their subsequent analysis and comparison between different cohorts, it is possible to improve understanding of the underlying trigger mechanisms of DU development and to determine temporal trends. In the future, the development of recommendations for the management of DU remains of pivotal importance to prevent DU development and obtain rapid healing as well as reduction of pain and disability.

  18. Establishment of Electronic Chart-based Stroke Registry System in a Medical System in Taiwan

    Directory of Open Access Journals (Sweden)

    Tsong-Hai Lee

    2011-08-01

    Full Text Available To establish a prospective, real-time, self-sustainable stroke registry system, we incorporated a registry with an electronic chart to create an electronic chart-based stroke registry system in November 2006. The International Classification of Diseases Ninth Revision code (430–437 was used to auto-enroll stroke patients admitted to neurology departments. Clinical information was written by doctors, nursing information was recorded by nurses, and basic patient information was entered by administrative departments. Numerical data and the date and time of any studies were auto-downloaded from the hospital computer. In total, 212 items were auto-downloaded, including basic patient information, laboratory blood test and examination results, and the date and time of imaging and special intervention. The stroke scales (121 items, National Institutes of Health Stroke Scale, Barthel index, and modified Rankin scale were designed to be auto-adjusted to reduce incompatibility. The 95 items with pull-down options were used to specify the contents. This registry system can be time-, labor- and money-saving with secured data accuracy.

  19. The Danish Registry on Regular Dialysis and Transplantation:completeness and validity of incident patient registration

    DEFF Research Database (Denmark)

    Hommel, Kristine; Rasmussen, Søren; Madsen, Mette

    2010-01-01

    BACKGROUND: The Danish National Registry on Regular Dialysis and Transplantation (NRDT) provides systematic information on the epidemiology and treatment of end-stage chronic kidney disease in Denmark. It is therefore of major importance that the registry is valid and complete. The aim of the pre...

  20. Intergenerational effects of endocrine-disrupting compounds: a review of the Michigan polybrominated biphenyl registry.

    Science.gov (United States)

    Curtis, Sarah W; Conneely, Karen N; Marder, Mary E; Terrell, Metrecia L; Marcus, Michele; Smith, Alicia K

    2018-06-11

    Endocrine-disrupting compounds (EDCs) are a broad class of chemicals present in many residential products that can disrupt hormone signaling and cause health problems in humans. Multigenerational cohorts, like the Michigan polybrominated biphenyl registry, are ideal for studying the effects of intergenerational exposure. Registry participants report hormone-related health problems, particularly in those exposed before puberty or those in the second generation exposed through placental transfer or breastfeeding. However, more research is needed to determine how EDCs cause health problems and the mechanisms underlying intergenerational exposure. Utilizing existing data in this registry, along with genetic and epigenetic approaches, could provide insight to how EDCs cause human disease and help to determine the risk to exposed populations and future generations.

  1. United States transuranium registry: Annual report, 1 October 1987--30 September 1988

    International Nuclear Information System (INIS)

    Swint, M.J.; Kathren, R.L.

    1989-04-01

    The primary objective this year was to initiate evaluation of Registry Case 246, an individual who had incurred the largest recorded human deposition of Am-241 as a result of a chemical explosion in a glove box. Because of the potential importance of this case, invitations for collaborative research were solicited from the scientific community. Other projects during the year included an international intercomparison of radiochemical analysis for actinides in tissue, a comparison of in-vivo and postmortem deposition estimates, a study of the fractionation of Am-241 and Pu-239+40 in skeleton and live, preliminary evaluation and modelling of the second whole body donation to the Registry, and a study of the distribution of actinides in lung and associated lymph nodes. The Registry was invited to participate in two international meetings during the year presenting evaluations and recommendations based on data gathered over more than 20 years of operation. A list of the papers presented at these meetings is included. 17 refs

  2. EPA Facility Registry Service (FRS): Facility Interests Dataset - Intranet Download

    Data.gov (United States)

    U.S. Environmental Protection Agency — This downloadable data package consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are...

  3. [Acute myocardial infarction in Morocco: FES-AMI registry data].

    Science.gov (United States)

    Akoudad, H; El Khorb, N; Sekkali, N; Mechrafi, A; Zakari, N; Ouaha, L; Lahlou, I

    2015-12-01

    Acute myocardial infarction is the most dangerous complication of coronary atherothrombosis. There are several disparities in regard to its management around the world. The aim of this study is to analyze the specificities of management of acute myocardial infarction in Morocco. FES-AMI (Fès Acute Myocardial Infarction) is a prospective monocentric registry conducted in cardiology department of Hassan II university hospital in Fès. In this registry, we enrolled patients with acute myocardial infarction who presented within 5 days after symptom onset. From January 2005 to August 2015, we enrolled 1835 patients. Seventy-five percent of patients were males and mean age was 60 years old. Fifty-one percent of patients were smokers, 27% were hypertensives and 14% were diabetics. Sixty-six percent of patients had more than 2 risk factors. Time from symptom onset to hospital admission was less than six hours for 40% of the patients. Thirty-six percent of patients were admitted more than twelve hours after the onset of chest pain. Only 37% of patients received reperfusion therapy, 31% with in-hospital thrombolysis and 6% with primary angioplasty. In-hospital mortality was 7.6%. The patients enrolled in our registry have late presentation of acute myocardial infarction and less rate of reperfusion therapy. Furthermore, the majority of our patients have multiple risk factors and this result underlines the failure of preventive interventions. Copyright © 2015 Elsevier Masson SAS. All rights reserved.

  4. The central registries of occupational and medical exposure in the Czech Republic

    International Nuclear Information System (INIS)

    Petrova, K.; Prouza, Z.

    1996-01-01

    This paper is intended to provide some insight into the recent situation in the Czech Republic concerning the registration and evaluation of occupational and medical radiation exposures. Since 1993 the creation of the Central (national) Registries of Occupational (CROE) and Medical Exposure (CRME) has been started. One of the main functions of these registries will be to provide statistics to guide policy making on a national basis. Authors give more detailed information on the structure of creating programs and discuss some actual arising problems. (author)

  5. A web-based collection of genotype-phenotype associations in hereditary recurrent fevers from the Eurofever registry.

    Science.gov (United States)

    Papa, Riccardo; Doglio, Matteo; Lachmann, Helen J; Ozen, Seza; Frenkel, Joost; Simon, Anna; Neven, Bénédicte; Kuemmerle-Deschner, Jasmin; Ozgodan, Huri; Caorsi, Roberta; Federici, Silvia; Finetti, Martina; Trachana, Maria; Brunner, Jurgen; Bezrodnik, Liliana; Pinedo Gago, Mari Carmen; Maggio, Maria Cristina; Tsitsami, Elena; Al Suwairi, Wafaa; Espada, Graciela; Shcherbina, Anna; Aksu, Guzide; Ruperto, Nicolino; Martini, Alberto; Ceccherini, Isabella; Gattorno, Marco

    2017-10-18

    Hereditary recurrent fevers (HRF) are a group of rare monogenic diseases leading to recurrent inflammatory flares. A large number of variants has been described for the four genes associated with the best known HRF, namely MEFV, NLRP3, MVK, TNFRSF1A. The Infevers database ( http://fmf.igh.cnrs.fr/ISSAID/infevers ) is a large international registry collecting variants reported in these genes. However, no genotype-phenotype associations are provided, but only the clinical phenotype of the first patient(s) described for each mutation. The aim of this study is to develop a registry of genotype-phenotype associations observed in patients with HRF, enrolled and validated in the Eurofever registry. Genotype-phenotype associations observed in all the patients with HRF enrolled in the Eurofever registry were retrospectively analyzed. For autosomal dominant diseases (CAPS and TRAPS), all mutations were individually analyzed. For autosomal recessive diseases (FMF and MKD), homozygous and heterozygous combinations were described. Mean age of onset, disease course (recurrent or chronic), mean duration of fever episodes, clinical manifestations associated with fever episodes, atypical manifestations, complications and response to treatment were also studied. Data observed in 751 patients (346 FMF, 133 CAPS, 114 MKD, 158 TRAPS) included in the Eurofever registry and validated by experts were summarized in Tables. A total of 149 variants were described: 46 TNFRSF1A and 27 NLRP3 variants, as well as various combinations of 48 MVK and 28 MEFV variants were available. We provide a potentially useful tool for physicians dealing with HRF, namely a registry of genotype-phenotype associations for patients enrolled in the Eurofever registry. This tool is complementary to the Infevers database and will be available at the Eurofever and Infevers websites.

  6. Establishment of the Fox Chase Network Breast Cancer Risk Registry

    National Research Council Canada - National Science Library

    Daly, Mary

    1997-01-01

    .... The development of the Fox Chase Cancer Center Breast Cancer Risk Registry was proposed to facilitate research in the epidemiologic and genetic predictors of disease and will permit evaluation...

  7. Environmental Protection Agency (EPA) Facility Registry Service (FRS) Power Plants

    Data.gov (United States)

    Department of Homeland Security — This GIS dataset contains data on wastewater treatment plants, based on EPA's Facility Registry Service (FRS) and NPDES, along with Clean Watersheds Needs Survey...

  8. Regional Cancer Registries – 20 Years and Growing

    Science.gov (United States)

    The NCI, Center for Global Health (CGH), the University of California at Irvine, the Middle East Cancer Consortium, and the International Agency for Research on Cancer partnered in support of the training course, held in Ankara, Turkey this past October, on The Uses of Cancer Registry Data in Cancer Control Research.

  9. The Three Mile Island Population Registry.

    Science.gov (United States)

    Goldhaber, M K; Tokuhata, G K; Digon, E; Caldwell, G G; Stein, G F; Lutz, G; Gur, D

    1983-01-01

    Shortly after the March 28, 1979, accident at the Three Mile Island (TMI) nuclear plant outside Harrisburg, Pa., the Pennsylvania Department of Health, in conjunction with the Centers for Disease Control and the U.S. Bureau of the Census, conducted a census of the 35,930 persons residing within 5 miles of the plant. With the help of 150 enumerators, demographic and health-related information was collected on each person to provide baseline data for future short- and long-term epidemiologic studies of the effects of the accident. Individual radiation doses were estimated on the basis of residential location and the amount of time each person spent in the 5-mile area during the 10 days after the accident. Health and behavioral resurveys of the population will be conducted approximately every 5 years. Population-mobility, morbidity, and mortality will be studied yearly by matching the TMI Population Registry with postal records, cancer registry records, and death certificate data. Because the radiation dose from TMI was extremely small, any increase in morbidity or mortality attributable to the accident would be so small as not to be measurable by present methods; however, adverse health effects as a result of psychological stress may occur. Also, a temporary increase in reporting of disease could occur because of increased surveillance and attention to health.

  10. Clinical features of paediatric pulmonary hypertension : a registry study

    NARCIS (Netherlands)

    Berger, Rolf M. F.; Beghetti, Maurice; Humpl, Tilman; Raskob, Gary E.; Ivy, D. Dunbar; Jing, Zhi-Cheng; Bonnet, Damien; Schulze-Neick, Ingram; Barst, Robyn J.

    2012-01-01

    Background Paediatric pulmonary hypertension, is an important cause of morbidity and mortality, and is insufficiently characterised in children. The Tracking Outcomes and Practice in Pediatric Pulmonary Hypertension (TOPP) registry is a global, prospective study designed to provide information about

  11. Existing data sources for clinical epidemiology: the Danish National Pathology Registry and Data Bank

    DEFF Research Database (Denmark)

    Erichsen, Rune; Lash, Timothy L; Hamilton-Dutoit, Stephen J

    2010-01-01

    Diagnostic histological and cytological specimens are routinely stored in pathology department archives. These biobanks are a valuable research resource for many diseases, particularly if they can be linked to high quality population-based health registries, allowing large retrospective epidemiol......Diagnostic histological and cytological specimens are routinely stored in pathology department archives. These biobanks are a valuable research resource for many diseases, particularly if they can be linked to high quality population-based health registries, allowing large retrospective...... epidemiological studies to be carried out. Such studies are of significant importance, for example in the search for novel prognostic and predictive biomarkers in the era of personalized medicine. Denmark has a wealth of highly-regarded population-based registries that are ideally suited to conduct this type...

  12. Danish Prostate Cancer Registry

    DEFF Research Database (Denmark)

    Helgstrand, J Thomas; Klemann, Nina; Røder, Martin Andreas

    2016-01-01

    of SNOMED codes were identified. A computer algorithm was developed to transcode SNOMED codes into an analyzable format including procedure (eg, biopsy, transurethral resection, etc), diagnosis, and date of diagnosis. For validation, ~55,000 pathological reports were manually reviewed. Prostate-specific...... antigen, vital status, causes of death, and tumor-node-metastasis classification were integrated from national registries. RESULTS: Of the 161,525 specimens from 113,801 males identified, 83,379 (51.6%) were sets of prostate biopsies, 56,118 (34.7%) were transurethral/transvesical resections......BACKGROUND: Systematized Nomenclature of Medicine (SNOMED) codes are computer-processable medical terms used to describe histopathological evaluations. SNOMED codes are not readily usable for analysis. We invented an algorithm that converts prostate SNOMED codes into an analyzable format. We...

  13. EPA Facility Registry Service (FRS): Facility Interests Dataset - Intranet Download

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are available in...

  14. The first report of a 5-year period cancer registry in Greece (2009-2013): a pathology-based cancer registry.

    Science.gov (United States)

    Patsea, Eleni; Kaklamanis, Loukas; Batistatou, Anna

    2018-04-01

    Cancer registries are essential in health care, since they allow more accurate planning of necessary health services and evaluation of programs for cancer prevention and control. The Hellenic Society of Pathology (HSP) having recognized the lack of such information in Greece has undertaken the task of a 5-year pathology-based cancer registry in Greece (2009-2013). In this study, > 95% of all pathology laboratories in the national health system hospitals and 100% of pathology laboratories in private hospitals, as well as > 80% of private pathology laboratories have contributed their data. The most common cancer types overall were as follows: breast cancer (18.26%), colorectal cancer (15.49%), prostate cancer (13.49%), and lung cancer (10.24% of all registered cancers). In men, the most common neoplasms were as follows: prostate cancer, colorectal cancer, lung cancer, and gastric cancer. In women, the most common neoplasms were as follows: breast cancer, colorectal cancer, thyroid cancer, and lung cancer. The data on cancer burden in Greece, presented herein, fill the void of cancer information in Greece that affects health care not only nationally but Europe-wise.

  15. The Changing Landscape for Stroke Prevention in AF: Findings From the GLORIA-AF Registry Phase 2

    NARCIS (Netherlands)

    Huisman, M.V.; Rothman, K.J.; Paquette, M.; Teutsch, C.; Diener, H.C.; Dubner, S.J.; Halperin, J.L.; Ma, C.S.; Zint, K.; Elsaesser, A.; Bartels, D.B.; Lip, G.Y.; Hemels, M.E.; et al.,

    2017-01-01

    BACKGROUND: GLORIA-AF (Global Registry on Long-Term Oral Antithrombotic Treatment in Patients with Atrial Fibrillation) is a prospective, global registry program describing antithrombotic treatment patterns in patients with newly diagnosed nonvalvular atrial fibrillation at risk of stroke. Phase 2

  16. Holt Oram syndrome : a registry-based study in Europe

    NARCIS (Netherlands)

    Barisic, Ingeborg; Boban, Ljubica; Greenlees, Ruth; Garne, Ester; Wellesley, Diana; Calzolari, Elisa; Addor, Marie-Claude; Arriola, Larraitz; Bergman, Jorieke E. H.; Braz, Paula; Budd, Judith L. S.; Gatt, Miriam; Haeusler, Martin; Khoshnood, Babak; Klungsoyr, Kari; McDonnell, Bob; Nelen, Vera; Pierini, Anna; Queisser-Wahrendorf, Annette; Rankin, Judith; Rissmann, Anke; Rounding, Catherine; Tucker, David; Verellen-Dumoulin, Christine; Dolk, Helen

    2014-01-01

    Background: Holt-Oram syndrome (HOS) is an autosomal dominant disorder characterised by upper limb anomalies and congenital heart defects. We present epidemiological and clinical aspects of HOS patients using data from EUROCAT (European Surveillance of Congenital Anomalies) registries. Methods: The

  17. Integration of data: the Nanomaterial Registry project and data curation

    International Nuclear Information System (INIS)

    Guzan, K A; Mills, K C; Gupta, V; Murry, D; Ostraat, M L; Scheier, C N; Willis, D A

    2013-01-01

    Due to the use of nanomaterials in multiple fields of applied science and technology, there is a need for accelerated understanding of any potential implications of using these unique and promising materials. There is a multitude of research data that, if integrated, can be leveraged to drive toward a better understanding. Integration can be achieved by applying nanoinformatics concepts. The Nanomaterial Registry is using applied minimal information about nanomaterials to support a robust data curation process in order to promote integration across a diverse data set. This paper describes the evolution of the curation methodology used in the Nanomaterial Registry project as well as the current procedure that is used. Some of the lessons learned about curation of nanomaterial data are also discussed. (paper)

  18. Walking the talk: the need for a trial registry for development interventions

    DEFF Research Database (Denmark)

    Rasmussen, Ole Dahl; Malchow-Møller, Nikolaj; Andersen, Thomas Barnebeck

    2011-01-01

    Recent advances in the use of randomised control trials to evaluate the effect of development interventions promise to enhance our knowledge of what works and why. A core argument supporting randomised studies is the claim that they have high internal validity. The authors argue that this claim...... is weak as long as a trial registry of development interventions is not in place. Without a trial registry, the possibilities for data mining, created by analyses of multiple outcomes and subgroups, undermine internal validity. Drawing on experience from evidence-based medicine and recent examples from...

  19. COMBINED ANTIHYPERTENSIVE THERAPY IN REAL CLINICAL PRACTICE. FOCUS ON FIXED COMBINATIONS OF ANTIHYPERTENSIVE DRUGS (According to the Data of Outpatient Registries RECVASA and PROFILE

    Directory of Open Access Journals (Sweden)

    S. Yu. Martsevich

    2017-01-01

    Full Text Available On Behalf of the Working Groups of the Registries PROFILE and REСVASA. Working Group of the PROFILE Registry: Akimova A.V., Voronina V.P., Dmitrieva N.A., Zakharova A.V., Zakharova N.A., Zagrebelnyy A.V., Kutishenko N.P., Lerman O.V., Lukina Yu.V., Tolpygina S.N., Martsevich S.Y.Working Group of the RECVASA Registry: Vorobyev A.N., Zagrebelnyy A.V., Kozminsky A.N., Lukina Yu.V., Loukianov M.M., Moseichuk K.A., Nikulina N.N., Pereverzeva K.G., Pravkina E.A., Boytsov S.A., Martsevich S.Yu., Yakushin S.S.Aim. To assess the frequency of prescription of different combinations of the main groups of antihypertensive drugs (AHD and their fixed combinations to patients with arterial hypertension by physicians according to two outpatient registries.Material and methods. Hypertension was diagnosed in 3648 (98.9% patients of the RECVASA registry and in 1230 patients of the PROFILE registry (80.3%. Data on doctor’s prescriptions reflected in the outpatient charts of patients of the both registries were analyzed. The following information of the prescribed antihypertensive therapy was studied in details: AHD, including fixed and free combinations, original and generic AHD. Data on the achievement/non-achievement of target blood pressure (BP level in patients with hypertension were also analyzed.Results. Women were predominated among hypertensive patients of the RECVASA registry, (71.9%. The ratio of men and women was close to 1:1 in the PROFILE registry. Patients of the registry RECVASA were older: the average age was 66.2±12.8 years compared to 63.7±11.4 years in patients of the PROFILE registry, respectively. The majority of patients in the RECVASA registry (61.4% had hypertension of the 3rd degree, patients of the PROFILE registry revealed mostly hypertension of the 2 degree (53.3%. Fixed combinations were prescribed to 14% of patients in the registry of RECVASA and to 16% of patients in the PROFILE registry. Doctors of the PROFILE registry often

  20. Eye Care Professionals' Perspectives on Eye Donation and an Eye Donation Registry for Research: A Single-Institution, Cross-Sectional Study.

    Science.gov (United States)

    Williams, Andrew M; Allingham, R Rand; Stamer, W Daniel; Muir, Kelly W

    2016-06-01

    A centralized eye donation registry for research could help to bridge the gap between patients interested in donating their eyes to science and scientists who conduct research on human eye tissue. Previous research has demonstrated patient and family support for such a registry. In this study, we assessed the views that eye care professionals have toward an eye donation registry for research. Surveys were distributed to all 46 clinical faculty members of the Duke University Eye Center. In addition to collecting demographic information, the surveys assessed clinicians' experience with discussing eye donation with patients, described the proposed eye donation registry for research and asked how the registry would affect the clinicians' practice. A total of 21 eye care professionals returned the survey. Thirty-three percent reported discussing eye donation with patients, and 43% reported that a patient has asked about donating their eyes for research on their disease. Eighty-six percent of eye care professionals reported that a centralized registry would improve the way they work with patients who express a desire to donate their eyes for research. The majority of eye care professionals at our academic institution indicated that an eye donation registry for research would improve how they work with patients who are interested in donating their eyes for research on their disease. Future research should examine how best to communicate this registry to ophthalmic patients.