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

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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.

Mortality in myasthenia gravis: A nationwide population-based follow-up study in Denmark

DEFF Research Database (Denmark)

Hansen, Julie S; Danielsen, Ditte H; Somnier, Finn E

2016-01-01

INTRODUCTION: In previous studies of myasthenia gravis (MG), increased mortality has been reported. The aim of this study was to estimate mortality in patients with acetylcholine receptor antibody-positive (AChR-Ab-seropositive) MG in a nationwide population-based, long-term follow-up study...

Processes of In-Hospital Psychiatric Care and Subsequent Criminal Behaviour Among Patients With Schizophrenia: A National Population-Based, Follow-Up Study

DEFF Research Database (Denmark)

Pedersen, Charlotte Gjørup; Olrik Wallenstein Jensen, Signe; Johnsen, Søren Paaske

2013-01-01

Objectives: It is unknown whether evidence-based, in-hospital processes of care may influence the risk of criminal behaviour among patients with schizophrenia. Our study aimed to examine the association between guideline recommended in-hospital psychiatric care and criminal behaviour among patients...... on criminal charges obtained from the Danish Crime Registry until November 2010. Results: Twenty per cent (n = 2175) of patients were charged with a crime during follow-up (median = 428 days). Violent crimes accounted for 59% (n = 1282) of the criminal offences. The lowest risk of crime was found among...... patients receiving the most processes of inhospital care (top quartile of received recommended care, compared with bottom quartiles, adjusted hazard ratio = 0.86, 95% CI 0.75 to 0.99). The individual processes of care associated with the lowest risk of criminal behaviour were antipsychotic treatment...

Factors Associated with Remission of Eczema in Children: a Population-based Follow-up Study.

OpenAIRE

von Kobyletzki, Laura; Bornehag, Carl-Gustaf; Breeze, Elizabeth; Larsson, Malin; Boman Lindström, Cecilia; Svensson, Åke

2014-01-01

The aim of this study was to analyse factors associated with remission of atopic dermatitis (AD) in childhood. A population-based AD cohort of 894 children aged 1-3 years from a cross-sectional baseline study in 2000 was followed up in 2005. The association between remission, background, health, lifestyle, and environmental variables was estimated with crude and multivariable logistic regression. At follow-up, 52% of the children had remission. Independent factors at baseline predicting remis...

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...

Danish Hip Arthroscopy Registry (DHAR)

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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...

The EMBARC European Bronchiectasis Registry: protocol for an international observational study

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James D. Chalmers

2016-01-01

Full Text Available Bronchiectasis is one of the most neglected diseases in respiratory medicine. There are no approved therapies and few large-scale, representative epidemiological studies. The EMBARC (European Multicentre Bronchiectasis Audit and Research Collaboration registry is a prospective, pan-European observational study of patients with bronchiectasis. The inclusion criterion is a primary clinical diagnosis of bronchiectasis consisting of: 1 a clinical history consistent with bronchiectasis; and 2 computed tomography demonstrating bronchiectasis. Core exclusion criteria are: 1 bronchiectasis due to known cystic fibrosis; 2 age <18 years; and 3 patients who are unable or unwilling to provide informed consent. The study aims to enrol 1000 patients by April 2016 across at least 20 European countries, and 10 000 patients by March 2020. Patients will undergo a comprehensive baseline assessment and will be followed up annually for up to 5 years with the goal of providing high-quality longitudinal data on outcomes, treatment patterns and quality of life. Data from the registry will be available in the form of annual reports. and will be disseminated in conference presentations and peer-reviewed publications. The European Bronchiectasis Registry aims to make a major contribution to understanding the natural history of the disease, as well as guiding evidence-based decision making and facilitating large randomised controlled trials.

Allogeneic blood transfusion and prognosis following total hip replacement: a population-based follow up study

DEFF Research Database (Denmark)

Pedersen, Alma B; Mehnert, Frank; Overgaard, Søren

2009-01-01

BACKGROUND: Allogeneic red blood cell transfusion is frequently used in total hip replacement surgery (THR). However, data on the prognosis of transfused patients are sparse. In this study we compared the risk of complications following THR in transfused and non-transfused patients. METHODS......: A population-based follow-up study was performed using data from medical databases in Denmark. We identified 28,087 primary THR procedures performed from 1999 to 2007, from which we computed a propensity score for red blood cell transfusion based on detailed data on patient-, procedure-, and hospital......-related characteristics. We were able to match 2,254 transfused with 2,254 non-transfused THR patients using the propensity score. RESULTS: Of the 28,087 THR patients, 9,063 (32.3%) received at least one red blood cell transfusion within 8 days of surgery. Transfused patients had higher 90-day mortality compared...

Possibility of retrospective follow up studies of mortality in the residents of Semipalatinsk region based on available archive data

International Nuclear Information System (INIS)

Bugembayeva, M.; Gaskov, A.; Valivach, M.; Musina, R.; Lipikhina, A.; Kurakina, N.; Kosatov, V.; Federbush, E.; Kusumi, S.

2003-01-01

Full text: Epidemiological follow up studies require the following basic data: exposure, people-years of observation, and registered events (incidence of diseases and/or deaths). Besides, it is important to register possible confounding factors such as sex, age, ethnicity, occupation, etc. Performing a joint Kazakhstan-Japanese project we are collecting such kind of data based on various archive documents. Retrospective radiation exposure reconstruction uses estimation methods with input data obtained from historic data, at present physical measurements and at present bio dosimetric measurements. Epidemiological studies is an important part of dose reconstruction, they provide the data on address history and occupation (for example, out-door or in-door job) in the period of atmospheric nuclear tests in 1949-1963. These data can be obtained from Household Books, which have been created and used by authorities for taxation purposes. Each Household Book cover a 2-3 year time band and contains lists of households (usually families), names, birth dates, occupation, ethnicity, and property. Unfortunately, Household Books have numerous mistakes in name spelling, birth dates, and handwriting is often bad. In addition, there are many cases when small children and old people are not mentioned in the lists. Correct data can be reconstructed by comparing the data of several subsequent Household Books and the data of ZAGSes (civilian registry offices). Such ZAGS document as birth certificate contains not only data on a newborn, but also correct names and birth dates of parents, place of birth. Marriage certificates include correct data on names and birth dates. If still there are any doubts, it is possible to collect additional information by interviewing old resident. Usually reconstruction of these data on a single person requires referral to 19 archive documents. A computer software designer A.Gaskov together with epidemiologists have developed a chain of technological

The value of gynecologic cancer follow-up: evidence-based ignorance?

Science.gov (United States)

Lajer, Henrik; Jensen, Mette B; Kilsmark, Jannie; Albæk, Jens; Svane, Danny; Mirza, Mansoor R; Geertsen, Poul F; Reerman, Diana; Hansen, Kåre; Milter, Maya C; Mogensen, Ole

2010-11-01

To explore the extent of evidence-based data and cost-utility of follow-up after primary treatment of endometrial and ovarian cancer, addressing perspectives of technology, organization, economics, and patients. Systematic literature searches according to the recommendations of the Cochrane Handbook for Systematic Reviews of Interventions were conducted separately for each of the 4 perspectives. In addition, the organizational analysis included a nationwide questionnaire survey among all relevant hospital departments, and the operating costs were calculated. None of the identified studies supported a survival benefit from hospital-based follow-up after completion of primary treatment of endometrial or ovarian cancer. The methods for follow-up were of low technology (gynecologic examination with or without ultrasound examination). Other technologies had poor sensitivity and specificity in detecting recurrence. Small changes in applied technologies and organization lead to substantial changes in costs. Substantial differences especially in frequency and applied methods were found between departments. The literature review did not find evidence that follow-up affects the women's quality of life. The main purpose of follow-up after treatment of cancer is improved survival. Our review of the literature showed no evidence of a positive effect on survival in women followed up after primary treatment of endometrial or ovarian cancer. The conception of follow-up among physicians, patients, and their relatives therefore needs revision. Follow-up after treatment should have a clearly defined and evidence-based purpose. Based on the existing literature, this purpose should presently focus on other end points rather than early detection of relapse and improved survival. These end points could be quality of life, treatment toxicity, and economy.

Evaluation of Partial and Total Splenectomy in Children with Sickle Cell Disease Using an Internet-Based Registry

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Mouttalib, Sofia; Rice, Henry E.; Snyder, Denise; Levens, Justin S.; Reiter, Audra; Soler, Pauline; Rothman, Jennifer A.; Thornburg, Courtney D.

2011-01-01

Background Clinical outcomes of children with sickle cell disease (SCD) who undergo total or partial splenectomy are poorly defined. The purpose of this retrospective study was to initiate an internet-based registry to facilitate analysis of clinical outcomes for these children. We hypothesized that both surgical procedures would be well tolerated and would eliminate risk of splenic sequestration. Methods We developed a web-based registry using the Research Electronic Data Capture (REDCap) platform. Children were included if they had SCD and underwent total splenectomy (TS) or partial splenectomy (PS) between 2003 to 2010. Clinical outcomes were compared between cohorts, with follow-up to one year. Results Twenty-four children were included, total splenectomy (n=15) and partial splenectomy (n=9). There were no differences in surgical time or intraoperative blood loss. The length of stay was longer after PS (4.1±1.7 days) compared to TS, (2.4±1.2 days, p=0.02). Within 30 days of surgery, 2 (20%) patients had acute chest syndrome following TS and 2 (15%) patients had acute chest syndrome after PS. During one year follow-up, no patient in either cohort had recurrent splenic sequestration, venous thrombosis or overwhelming post-splenectomy sepsis. All children who were transfused preoperatively to prevent recurrent splenic sequestration successfully discontinued transfusions. Conclusions Both TS and PS result in favorable hematologic outcomes and low risk of adverse events for children with SCD. A REDCap based registry may facilitate data entry and analysis of clinical outcomes to allow for comparison between different types of splenectomy. PMID:22238140

Comparing the effects of education using telephone follow-up and smartphone-based social networking follow-up on self-management behaviors among patients with hypertension.

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Najafi Ghezeljeh, Tahereh; Sharifian, Sanaz; Nasr Isfahani, Mehdi; Haghani, Hamid

2018-03-05

Little is known about the benefits of social networks in the management of patients. The aim of this study was to compare the effects of self-management (SM) education using telephone follow-up and mobile phone-based social networking on SM behaviors among patients with hypertension. This randomized clinical trial was conducted with 100 patients. They were randomly allocated to four groups: (i) control, (ii) SM training without follow-up, (iii) telephone follow-up and (iv) smartphone-based social networking follow-up. The hypertension SM behavior questionnaire was used for data collection before and six weeks after the study. Those patients who underwent SM education training (with and without follow-up) had statistically significant differences from those in the control group in terms of SM behaviors (p social networking follow-up influenced SM behaviors among patients with hypertension.

Midlife Alcohol Consumption and Risk of Dementia Over 43 Years of Follow-Up: A Population-Based Study From the Swedish Twin Registry.

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Handing, Elizabeth P; Andel, Ross; Kadlecova, Pavla; Gatz, Margaret; Pedersen, Nancy L

2015-10-01

Midlife alcohol consumption (beer, wine, and spirits) was examined in relation to dementia incidence over 43 years. Participants were 12,326 members of the population-based Swedish Twin Registry born during 1907-1925 who responded to items about alcohol consumption in 1967/1970, subsequently classified as nondrinking (0 grams of ethanol per day), light (1-5g/d), moderate (5-12g/d), heavy (12-24g/d), and very heavy (>24g/d) drinking. Dementia was identified from the National Patient and Cause of Death Registries. Cox proportional hazard models adjusted for cluster-correlated data were used in cohort analyses. Conditional logistic regression (dementia-discordant pairs) and mixed effects models (dementia-concordant pairs) were used in twin analyses. Overall, nondrinkers did not differ from light drinkers in dementia risk. Heavy drinking (hazard ratio = 1.10, p = .028) and very heavy drinking (hazard ratio = 1.18, p = .033) were associated with increased dementia risk controlling for sociodemographic, lifestyle, and cardiovascular factors. More alcohol from spirits was related to increased risk of dementia, whereas more alcohol from wine with decreased risk, although the association for wine reversed direction at high amounts. Relative to co-twins drinking light amounts, moderate-to-heavy drinking twins had (a) greater risk of dementia by 57% (p = .006, 300% in monozygotic pairs only) and (b) reduced time to dementia by 4.76 years (p = .019, 4.78 years in monozygotic pairs only). Averaging more than 12 grams of alcohol per day may increase risk of dementia. Alcohol from spirits appears particularly important for the increased dementia risk. Genetic and/or familial factors do not explain these associations. Alcohol use reduction may be a useful population-wide intervention strategy. © The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Implementation of a prospective pregnancy registry for antiretroviral based HIV prevention trials.

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Mhlanga, Felix G; Noguchi, Lisa; Balkus, Jennifer E; Kabwigu, Samuel; Scheckter, Rachel; Piper, Jeanna; Watts, Heather; O'Rourke, Colin; Torjesen, Kristine; Brown, Elizabeth R; Hillier, Sharon L; Beigi, Richard

2018-02-01

Safety data on pregnancy and fetal outcomes among women in HIV prevention trials are urgently needed to inform use of effective antiretroviral agents for HIV prevention. We describe an effective, efficient, and novel method to prospectively collect perinatal safety data concurrent with on-going parent clinical trials. The Microbicide Trials Network (MTN)-016 study is a multinational prospective pregnancy exposure registry designed to capture pregnancy and neonatal outcomes. Studies currently contributing data to this registry included phase I and II safety trials with planned exposures to candidate HIV prevention agents, as well as phase IIB and III efficacy trials capturing data on pregnancy and infant outcomes following inadvertent fetal exposure during study participation. To date, participants from two phase I studies and two effectiveness trials have participated in MTN-016, resulting in 420 pregnant women and 381 infants enrolled. Infant retention has been high, with 329 of 381 (86%) infants completing the 12-month follow-up visit. In a research setting context, it is feasible to establish and implement a prospective, multinational HIV chemoprophylaxis pregnancy registry that will generate pregnancy exposure data in a robust fashion.

Cardiovascular events after ischemic stroke in young adults: A prospective follow-up study.

Science.gov (United States)

Aarnio, Karoliina; Siegerink, Bob; Pirinen, Jani; Sinisalo, Juha; Lehto, Mika; Haapaniemi, Elena; Nave, Alexander-Heinrich; Kaste, Markku; Tatlisumak, Turgut; Putaala, Jukka

2016-05-17

To study the long-term risk of recurrent cardiac, arterial, and venous events in young stroke patients, and whether these risks differed between etiologic subgroups. The study population comprised 970 patients aged 15-49 years from the Helsinki Young Stroke Registry (HYSR) who had an ischemic stroke in 1994-2007. We obtained follow-up data until 2012 from the Finnish Care Register and Statistics Finland. Cumulative 15-year risks were analyzed with life tables, whereas relative risks and corresponding confidence intervals (CI) were based on hazard ratios (HR) from Cox regression analyses. There were 283 (29.2%) patients with a cardiovascular event during the median follow-up of 10.1 years (range 0.1-18.0). Cumulative 15-year risk for venous events was 3.9%. Cumulative 15-year incidence rate for composite vascular events was 34.0 (95% CI 30.1-38.2) per 1,000 person-years. When adjusted for age and sex, patients with an index stroke caused by high-risk sources of cardioembolism had the highest HR for any subsequent cardiovascular events (3.7; 95% CI 2.6-5.4), whereas the large-artery atherosclerosis group had the highest HR (2.7; 95% CI 1.6-4.6) for recurrent stroke compared with patients with stroke of undetermined etiology. The risk for future cardiovascular events after ischemic stroke in young adults remains high for years after the index stroke, in particular when the index stroke is caused by high-risk sources of cardioembolism or large-artery atherosclerosis. © 2016 American Academy of Neurology.

Progression of motor subtypes in Huntington's disease: a 6-year follow-up study.

Science.gov (United States)

Jacobs, M; Hart, E P; van Zwet, E W; Bentivoglio, A R; Burgunder, J M; Craufurd, D; Reilmann, R; Saft, C; Roos, R A C

2016-10-01

The objective of this study is to investigate the progression of predominantly choreatic and hypokinetic-rigid signs in Huntington's disease (HD) and their relationship with cognitive and general functioning over time. The motor signs in HD can be divided into predominantly choreatic and hypokinetic-rigid subtypes. It has been reported in cross-sectional studies that predominantly choreatic HD patients perform better on functional and cognitive assessments compared to predominantly hypokinetic-rigid HD patients. The course of these motor subtypes and their clinical profiles has not been investigated longitudinally. A total of 4135 subjects who participated in the European HD Network REGISTRY study were included and classified at baseline as either predominantly choreatic (n = 891), hypokinetic-rigid (n = 916), or mixed-motor (n = 2328), based on a previously used method. The maximum follow-up period was 6 years. The mixed-motor group was not included in the analyses. Linear mixed models were constructed to investigate changes in motor subtypes over time and their relationship with cognitive and functional decline. Over the 6-year follow-up period, the predominantly choreatic group showed a significant decrease in chorea, while hypokinetic-rigid symptoms slightly increased in the hypokinetic-rigid group. On the Total Functional Capacity, Stroop test, and Verbal fluency task the rate of change over time was significantly faster in the predominantly choreatic group, while on all other clinical assessments the decline was comparable for both groups. Our results suggest that choreatic symptoms decrease over time, whereas hypokinetic-rigid symptoms slightly increase in a large cohort of HD patients. Moreover, different motor subtypes can be related to different clinical profiles.

Childhood leukaemia in Europe after Chernobyl: Five year follow-up of cancer registry populations

Energy Technology Data Exchange (ETDEWEB)

Parkin, D M; Black, R J; Kramarova, E [International Agency for Research on Cancer, Lyon (France); Clayton, D [University of Cambridge, Cambridge (United Kingdom)

1997-09-01

The European Childhood Leukaemia-Lymphoma Incidence Study (ECLIS) aims to monitor trends in the incidence of these diseases in European populations in relation to estimated exposures to radioactive material released at the time of the Chernobyl accident. Thirty-six cancer registries in 23 countries are collaborating in ECLIS, coordinated by the International Agency for Research on Cancer (IARC). 3 figs, 3 tabs.

Childhood leukaemia in Europe after Chernobyl: Five year follow-up of cancer registry populations

International Nuclear Information System (INIS)

Parkin, D.M.; Black, R.J.; Kramarova, E.; Clayton, D.

1997-01-01

The European Childhood Leukaemia-Lymphoma Incidence Study (ECLIS) aims to monitor trends in the incidence of these diseases in European populations in relation to estimated exposures to radioactive material released at the time of the Chernobyl accident. Thirty-six cancer registries in 23 countries are collaborating in ECLIS, coordinated by the International Agency for Research on Cancer (IARC). 3 figs, 3 tabs

Cancer in ANCA-Associated Glomerulonephritis: A Registry-Based Cohort Study

Directory of Open Access Journals (Sweden)

Sanjeevan Sriskandarajah

2017-01-01

Full Text Available Background. Immunosuppressive therapy for antineutrophil cytoplasmic antibody-associated vasculitis has been associated with increased malignancy risk. Objectives. To quantify the cancer risk associated with contemporary cyclophosphamide-sparing protocols. Methods. Patients from the Norwegian Kidney Biopsy Registry between 1988 and 2012 who had biopsy-verified pauci-immune glomerulonephritis and positive antineutrophil cytoplasmic antibody (ANCA serology were included. Standardised incidence ratios (SIRs were calculated to compare the study cohort with the general population. Results. The study cohort included 419 patients. During 3010 person-years, cancer developed in 41 patients (9.79%; the expected number of cancer cases was 37.5 (8.95%. The cohort had SIRs as follows: 1.09, all cancer types (95% CI, 0.81 to 1.49; 0.96, all types except nonmelanoma skin cancer (95% CI, 0.69 to 1.34; 3.40, nonmelanoma skin cancer (95% CI, 1.62 to 7.14; 3.52, hematologic cancer (95% CI, 1.32 to 9.37; 2.12, posttransplant cancer (95% CI, 1.01 to 4.44; and 1.53, during the 1–5-year follow-up after diagnosis (95% CI, 1.01 to 2.32. Conclusions. Cancer risk did not increase significantly in this cohort with ANCA-associated glomerulonephritis. However, increased risk of nonmelanoma skin cancer, posttransplant cancer, and hematologic cancer indicates an association between immunosuppression and malignancy.

New methods for estimating follow-up rates in cohort studies

Directory of Open Access Journals (Sweden)

Xiaonan Xue

2017-12-01

Full Text Available Abstract Background The follow-up rate, a standard index of the completeness of follow-up, is important for assessing the validity of a cohort study. A common method for estimating the follow-up rate, the “Percentage Method”, defined as the fraction of all enrollees who developed the event of interest or had complete follow-up, can severely underestimate the degree of follow-up. Alternatively, the median follow-up time does not indicate the completeness of follow-up, and the reverse Kaplan-Meier based method and Clark’s Completeness Index (CCI also have limitations. Methods We propose a new definition for the follow-up rate, the Person-Time Follow-up Rate (PTFR, which is the observed person-time divided by total person-time assuming no dropouts. The PTFR cannot be calculated directly since the event times for dropouts are not observed. Therefore, two estimation methods are proposed: a formal person-time method (FPT in which the expected total follow-up time is calculated using the event rate estimated from the observed data, and a simplified person-time method (SPT that avoids estimation of the event rate by assigning full follow-up time to all events. Simulations were conducted to measure the accuracy of each method, and each method was applied to a prostate cancer recurrence study dataset. Results Simulation results showed that the FPT has the highest accuracy overall. In most situations, the computationally simpler SPT and CCI methods are only slightly biased. When applied to a retrospective cohort study of cancer recurrence, the FPT, CCI and SPT showed substantially greater 5-year follow-up than the Percentage Method (92%, 92% and 93% vs 68%. Conclusions The Person-time methods correct a systematic error in the standard Percentage Method for calculating follow-up rates. The easy to use SPT and CCI methods can be used in tandem to obtain an accurate and tight interval for PTFR. However, the FPT is recommended when event rates and

Survival analysis with functional covariates for partial follow-up studies.

Science.gov (United States)

Fang, Hong-Bin; Wu, Tong Tong; Rapoport, Aaron P; Tan, Ming

2016-12-01

Predictive or prognostic analysis plays an increasingly important role in the era of personalized medicine to identify subsets of patients whom the treatment may benefit the most. Although various time-dependent covariate models are available, such models require that covariates be followed in the whole follow-up period. This article studies a new class of functional survival models where the covariates are only monitored in a time interval that is shorter than the whole follow-up period. This paper is motivated by the analysis of a longitudinal study on advanced myeloma patients who received stem cell transplants and T cell infusions after the transplants. The absolute lymphocyte cell counts were collected serially during hospitalization. Those patients are still followed up if they are alive after hospitalization, while their absolute lymphocyte cell counts cannot be measured after that. Another complication is that absolute lymphocyte cell counts are sparsely and irregularly measured. The conventional method using Cox model with time-varying covariates is not applicable because of the different lengths of observation periods. Analysis based on each single observation obviously underutilizes available information and, more seriously, may yield misleading results. This so-called partial follow-up study design represents increasingly common predictive modeling problem where we have serial multiple biomarkers up to a certain time point, which is shorter than the total length of follow-up. We therefore propose a solution to the partial follow-up design. The new method combines functional principal components analysis and survival analysis with selection of those functional covariates. It also has the advantage of handling sparse and irregularly measured longitudinal observations of covariates and measurement errors. Our analysis based on functional principal components reveals that it is the patterns of the trajectories of absolute lymphocyte cell counts, instead of

3-year follow-up of a long-term registry-based multicentre study on vitamin E diffused polyethylene in total hip replacement

DEFF Research Database (Denmark)

Sillesen, Nanna Hylleholt; Greene, Meridith E; Nebergall, Audrey K

2016-01-01

PURPOSE: Preclinical studies of vitamin E diffused highly cross-linked polyethylene (E-XLPE) has shown enhanced mechanical properties with less wear. The purpose of our study was to document the early clinical outcome of E-XLPE to ensure, for the safety of patients, that there are no unforeseen...... hip arthroplasty in functionality and quality of life across the centers. We have not observed any early in vivo adverse effects from diffusing the liners with vitamin E. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT00545285....... early adverse events from using this new biomaterial. METHODS: The enrolled patients (n = 977) have received either a porous titanium coated or porous plasma sprayed acetabular shell with either a E-XLPE liner or a medium cross-linked (AXL) liner. At each follow-up 5 patient-reported outcome measures...

[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.

Design and implementation of a mobile system for lung cancer patient follow-up in China and initial report of the ongoing patient registry.

Science.gov (United States)

Ye, Xiangyun; Wei, Jia; Li, Ziming; Niu, Xiaomin; Wang, Jiemin; Chen, Yunqin; Guo, Zongming; Lu, Shun

2017-01-17

Management of lung cancer remains a challenge. Although clinical and biological patient data are crucial for cancer research, these data may be missing from registries and clinical trials. Biobanks provide a source of high-quality biological material for clinical research; however, linking these samples to the corresponding patient and clinical data is technically challenging. We describe the mobile Lung Cancer Care system (mLCCare), a novel tool which integrates biological and clinical patient data into a single resource. mLCCare was developed as a mobile device application (app) and an internet website. Data storage is hosted on cloud servers, with the mobile app and website acting as a front-end to the system. mLCCare also facilitates communication with patients to remind them to take their medication and attend follow-up appointments. Between January 2014 and October 2015, 5,080 patients with lung cancer have been registered with mLCCare. Data validation ensures all the patient information is of consistently high-quality. Patient cohorts can be constructed via user-specified criteria and data exported for statistical analysis by authorized investigators and collaborators. mLCCare forms the basis of establishing an ongoing lung cancer registry and could form the basis of a high-quality multisite patient registry. Integration of mLCCare with SMS messaging and WeChat functionality facilitates communication between physicians and patients. It is hoped that mLCCare will prove to be a powerful and widely used tool that will enhance both research and clinical practice.

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.

Cancer among Scandinavian women with cosmetic breast implants: a pooled long-term follow-up study.

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Lipworth, Loren; Tarone, Robert E; Friis, Søren; Ye, Weimin; Olsen, Jørgen H; Nyren, Olof; McLaughlin, Joseph K

2009-01-15

No increased risks of specific types of cancer following breast implantation have been consistently reported, but data on risk beyond 15 years are limited. We have pooled the results of 2 nationwide cohort studies of 3,486 Swedish and 2,736 Danish women who underwent cosmetic breast implantation between 1965 and 1993. Cancer incidence through 2002 was ascertained through nationwide cancer registries. Standardized incidence ratios (SIRs) and 95% confidence intervals (CIs) were calculated to compare cancer incidence among women with implants with women in the general population. Mean duration of follow up was 16.6 years (range 0.1-37.8 years). Over 50% of women were followed for 15 years or more after breast implantation and 13.3% for at least 25 years. There was a reduced incidence of breast cancer (SIR=0.73; 95% CI 0.58-0.90), whereas lung cancer was above expectation (SIR=1.64; 95% CI 1.10-2.36). The increased risk of lung cancer is expected due to the high prevalence of smoking among the women with implants in our study. With respect to other site-specific cancers, no significantly increased or decreased SIR was observed. This study, which includes women followed for almost 4 decades, represents the longest follow up of women with cosmetic breast implants to date. The results provide no evidence of an association between breast implants and any type of cancer. Copyright (c) 2008 Wiley-Liss, Inc.

The value of gynecologic cancer follow-up: evidence-based ignorance?

DEFF Research Database (Denmark)

Lajer, Henrik; Jensen, Mette B; Kilsmark, Jannie

2010-01-01

To explore the extent of evidence-based data and cost-utility of follow-up after primary treatment of endometrial and ovarian cancer, addressing perspectives of technology, organization, economics, and patients.......To explore the extent of evidence-based data and cost-utility of follow-up after primary treatment of endometrial and ovarian cancer, addressing perspectives of technology, organization, economics, and patients....

Allogeneic blood transfusion and prognosis following total hip replacement: a population-based follow up study

Directory of Open Access Journals (Sweden)

Overgaard Soren

2009-12-01

Full Text Available Abstract Background Allogeneic red blood cell transfusion is frequently used in total hip replacement surgery (THR. However, data on the prognosis of transfused patients are sparse. In this study we compared the risk of complications following THR in transfused and non-transfused patients. Methods A population-based follow-up study was performed using data from medical databases in Denmark. We identified 28,087 primary THR procedures performed from 1999 to 2007, from which we computed a propensity score for red blood cell transfusion based on detailed data on patient-, procedure-, and hospital-related characteristics. We were able to match 2,254 transfused with 2,254 non-transfused THR patients using the propensity score. Results Of the 28,087 THR patients, 9,063 (32.3% received at least one red blood cell transfusion within 8 days of surgery. Transfused patients had higher 90-day mortality compared with matched non-transfused patients: the adjusted OR was 2.2 (95% confidence interval (CI: 1.2-3.8. Blood transfusion was also associated with increased odds of pneumonia (OR 2.1; CI: 1.2-3.8, whereas the associations with cardiovascular or cerebrovascular events (OR 1.4; CI: 0.9-2.2 and venous thromboembolism (OR 1.2; CI: 0.7-2.1 did not reach statistical significance. The adjusted OR of reoperation due to infection was 0.6 (CI: 0.1-2.9. Conclusions Red blood cell transfusion was associated with an adverse prognosis following primary THR, in particular with increased odds of death and pneumonia. Although the odds estimates may partly reflect unmeasured bias due to blood loss, they indicate the need for careful assessment of the risk versus benefit of transfusion even in relation to routine THR procedures.

Factors associated with remission of eczema in children: a population-based follow-up study.

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von Kobyletzki, Laura B; Bornehag, Carl-Gustaf; Breeze, Elizabeth; Larsson, Malin; Lindström, Cecilia Boman; Svensson, Åke

2014-03-01

The aim of this study was to analyse factors associated with remission of atopic dermatitis (AD) in childhood. A population-based AD cohort of 894 children aged 1-3 years from a cross-sectional baseline study in 2000 was followed up in 2005. The association between remission, background, health, lifestyle, and environmental variables was estimated with crude and multivariable logistic regression. At follow-up, 52% of the children had remission. Independent factors at baseline predicting remission were: milder eczema (adjusted odds ratio (aOR), 1.43; 95% confidence interval (95% CI) 1.16-1.77); later onset of eczema (aOR 1.40; 95% CI 1.08-1.80); non-flexural eczema (aOR 2.57; 95% CI 1.62-4.09); no food allergy (aOR 1.51; 95% CI 1.11-2.04), and rural living (aOR 1.48; 95% CI 1.07-2.05). Certain aspects of AD and rural living were important for remission, but despite the initial hypotheses to the contrary, the environmental factors examined in this paper were not substantial predictors of remission.

Internet of things and bariatric surgery follow-up: Comparative study of standard and IoT follow-up.

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Vilallonga, Ramon; Lecube, Albert; Fort, José Manuel; Boleko, Maria Angeles; Hidalgo, Marta; Armengol, Manel

2013-09-01

Follow-up of obese patient is difficult. There is no literature related to patient follow-up that incorporates the concept of Internet of Things (IoT), use of WiFi, Internet, or portable devices for this purpose. This prospective observational study commenced in June 2011. Patients were prospectively offered to participate in the IoT study group, in which they received a WiFi scale (Withing®, Paris) that provides instant WiFi data to the patient and surgeon. Other patients were admitted to the standard follow-up group at the outpatient clinic. A total of 33 patients were included in our study (ten in the IoT group). Twelve patients did not have WiFi at home, ten lacked of computer knowledge, and seven preferred standard for follow-up. All patients underwent different surgical procedures. There were no complications. Excess weight loss (EWL) was similar in both groups. More than 90% of patients were satisfied. In the IoT group, patients considered it valuable in saving time, and considered seeing their evolution graphics extremely motivating. IoT technology can monitor medical parameters remotely and collect data. A WiFi scale can facilitate preoperative and follow-up. Standard follow-up in a classical outpatient clinic setting with the surgeon was preferred globally.

Percutaneous mitral valve edge-to-edge repair: in-hospital results and 1-year follow-up of 628 patients of the 2011-2012 Pilot European Sentinel Registry.

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Nickenig, Georg; Estevez-Loureiro, Rodrigo; Franzen, Olaf; Tamburino, Corrado; Vanderheyden, Marc; Lüscher, Thomas F; Moat, Neil; Price, Susanna; Dall'Ara, Gianni; Winter, Reidar; Corti, Roberto; Grasso, Carmelo; Snow, Thomas M; Jeger, Raban; Blankenberg, Stefan; Settergren, Magnus; Tiroch, Klaus; Balzer, Jan; Petronio, Anna Sonia; Büttner, Heinz-Joachim; Ettori, Federica; Sievert, Horst; Fiorino, Maria Giovanna; Claeys, Marc; Ussia, Gian Paolo; Baumgartner, Helmut; Scandura, Salvatore; Alamgir, Farqad; Keshavarzi, Freidoon; Colombo, Antonio; Maisano, Francesco; Ebelt, Henning; Aruta, Patrizia; Lubos, Edith; Plicht, Björn; Schueler, Robert; Pighi, Michele; Di Mario, Carlo

2014-09-02

The use of transcatheter mitral valve repair (TMVR) has gained widespread acceptance in Europe, but data on immediate success, safety, and long-term echocardiographic follow-up in real-world patients are still limited. The aim of this multinational registry is to present a real-world overview of TMVR use in Europe. The Transcatheter Valve Treatment Sentinel Pilot Registry is a prospective, independent, consecutive collection of individual patient data. A total of 628 patients (mean age 74.2 ± 9.7 years, 63.1% men) underwent TMVR between January 2011 and December 2012 in 25 centers in 8 European countries. The prevalent pathogenesis was functional mitral regurgitation (FMR) (n = 452 [72.0%]). The majority of patients (85.5%) were highly symptomatic (New York Heart Association functional class III or higher), with a high logistic EuroSCORE (European System for Cardiac Operative Risk Evaluation) (20.4 ± 16.7%). Acute procedural success was high (95.4%) and similar in FMR and degenerative mitral regurgitation (p = 0.662). One clip was implanted in 61.4% of patients. In-hospital mortality was low (2.9%), without significant differences between groups. The estimated 1-year mortality was 15.3%, which was similar for FMR and degenerative mitral regurgitation. The estimated 1-year rate of rehospitalization because of heart failure was 22.8%, significantly higher in the FMR group (25.8% vs. 12.0%, p[log-rank] = 0.009). Paired echocardiographic data from the 1-year follow-up, available for 368 consecutive patients in 15 centers, showed a persistent reduction in the degree of mitral regurgitation at 1 year (6.0% of patients with severe mitral regurgitation). This independent, contemporary registry shows that TMVR is associated with high immediate success, low complication rates, and sustained 1-year reduction of the severity of mitral regurgitation and improvement of clinical symptoms. Copyright © 2014 American College of Cardiology Foundation. Published by Elsevier Inc

Potentially traumatic events as predictors of disability pension: A 10-year follow-up study in Norway.

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Lassemo, Eva; Sandanger, Inger

2018-05-01

Are potentially traumatic events associated with subsequent disability pension? Traumatic exposure and post-traumatic stress disorder (PTSD) may represent a disabling state with both personal and professional consequences for the affected individual. Despite this, there is a scarcity of research studying the effects of traumatic exposure on disability pension. This study examined the differences in risk for disability pension among unexposed, exposed to trauma and PTSD cases. An ambidirectional Norwegian cohort study, consisting of 1238 individuals aged 18-66 years who were at risk of disability pension, were interviewed using the Composite International Diagnostic Interview, and linked with registry data on disability pension. Registry follow-up in the Norwegian Insurance Database lasted ten years following interview in 2000-01. The risk of disability pension after traumatic exposure, divided into accidental and premeditated, was assessed by Cox proportional hazards regression analysis. In 10 years, 9.5% of the cohort had been granted disability pension. Overall exposure to traumatic events did not alter the risk of disability pension. However, among women, exposure to premeditated traumas did increase the risk (HR 2.96 (95% CI 1.54-5.68)), and was an independent risk factor. Fulfilling criteria for PTSD caseness further increased the risk (HR 4.69 (95% CI 1.78-12.40)). There was no increased risk found between traumatic exposure and disability pension for men. Exposure to trauma, particularly premeditated trauma, seems to be an independent risk factor for disability pension in women.

Correcting for catchment area nonresidency in studies based on tumor-registry data

International Nuclear Information System (INIS)

Sposto, R.; Preston, D.L.

1993-05-01

We discuss the effect of catchment area nonresidency on estimates of cancer incidence from a tumor-registry-based cohort study and demonstrate that a relatively simple correction is possible in the context of Poisson regression analysis if individual residency histories or the probabilities of residency are known. A comparison of a complete data maximum likelihood analysis with several Poisson regression analyses demonstrates the adequacy of the simple correction in a large simulated data set. We compare analyses of stomach-cancer incidence from the Radiation Effects Research Foundation tumor registry with and without the correction. We also discuss some implications of including cases identified only on the basis of death certificates. (author)

The Italian Registry of Antiphospholipid Antibodies.

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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

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

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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.

High School Longitudinal Study of 2009 (HSLS:09) Base Year to First Follow-Up Data File Documentation. NCES 2014-361

Science.gov (United States)

Ingels, Steven J.; Pratt, Daniel J.; Herget, Deborah R.; Dever, Jill A.; Fritch, Laura Burns; Ottem, Randolph; Rogers, James E.; Kitmitto, Sami; Leinwand, Steve

2013-01-01

This manual has been produced to familiarize data users with the design, and the procedures followed for data collection and processing, in the base year and first follow-up of the High School Longitudinal Study of 2009 (HSLS:09), with emphasis on the first follow-up. It also provides the necessary documentation for use of the public-use data…

Characterization and utilization of an international neurofibromatosis web-based, patient-entered registry: An observational study.

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Seidlin, Mindell; Holzman, Robert; Knight, Pamela; Korf, Bruce; Rangel Miller, Vanessa; Viskochil, David; Bakker, Annette

2017-01-01

The neurofibromatoses (neurofibromatosis type 1, neurofibromatosis type 2 and schwannomatosis) are rare disorders having clinical manifestations that vary greatly from patient to patient. The rarity and variability of these disorders has made it challenging for investigators to identify sufficient numbers of patients with particular clinical characteristics or specific germline mutations for participation in interventional studies. Similarly, because the natural history of all types of neurofibromatosis (NF) is variable and unique for each individual, it is difficult to identify meaningful clinical outcome measures for potential therapeutic interventions. In 2012, the Children's Tumor Foundation created a web-based patient-entered database, the NF Registry, to inform patients of research opportunities for which they fit general eligibility criteria and enable patients to contact investigators who are seeking to enroll patients in approved trials. Registrants were recruited through CTF-affiliated NF clinics and conferences, through its website, and by word-of-mouth and social media. Following online consent, demographic information and details regarding manifestations of NF were solicited on the Registry website. Statistical analyses were performed on data from a cohort of 4680 registrants (the number of registrants as of October 9, 2015) who met diagnostic criteria for one of the 3 NF conditions. The analyses support our hypothesis that patient-reported symptom incidences in the NF Registry are congruent with published clinician-sourced data. Between April 26, 2013 and July 8, 2016, the registry has been useful to investigators in recruitment, particularly for observational trials, especially those for development of patient-reported outcomes.

Characterization and utilization of an international neurofibromatosis web-based, patient-entered registry: An observational study.

Directory of Open Access Journals (Sweden)

Mindell Seidlin

Full Text Available The neurofibromatoses (neurofibromatosis type 1, neurofibromatosis type 2 and schwannomatosis are rare disorders having clinical manifestations that vary greatly from patient to patient. The rarity and variability of these disorders has made it challenging for investigators to identify sufficient numbers of patients with particular clinical characteristics or specific germline mutations for participation in interventional studies. Similarly, because the natural history of all types of neurofibromatosis (NF is variable and unique for each individual, it is difficult to identify meaningful clinical outcome measures for potential therapeutic interventions. In 2012, the Children's Tumor Foundation created a web-based patient-entered database, the NF Registry, to inform patients of research opportunities for which they fit general eligibility criteria and enable patients to contact investigators who are seeking to enroll patients in approved trials. Registrants were recruited through CTF-affiliated NF clinics and conferences, through its website, and by word-of-mouth and social media. Following online consent, demographic information and details regarding manifestations of NF were solicited on the Registry website. Statistical analyses were performed on data from a cohort of 4680 registrants (the number of registrants as of October 9, 2015 who met diagnostic criteria for one of the 3 NF conditions. The analyses support our hypothesis that patient-reported symptom incidences in the NF Registry are congruent with published clinician-sourced data. Between April 26, 2013 and July 8, 2016, the registry has been useful to investigators in recruitment, particularly for observational trials, especially those for development of patient-reported outcomes.

Up-to-date and projected estimates of survival for people with cystic fibrosis using baseline characteristics: A longitudinal study using UK patient registry data.

Science.gov (United States)

Keogh, Ruth H; Szczesniak, Rhonda; Taylor-Robinson, David; Bilton, Diana

2018-03-01

on Epidemiology of Cystic Fibrosis by MacNeill (2016), the study of MacKenzie and colleagues (2014), and references therein. There have been many studies of factors associated with survival in CF; most have focused on identifying risk factors, and only a few have presented estimated survival curves, which are the focus of this work. The most recent study of survival in the UK is by Dodge and colleagues (2007), who used data obtained from CF clinics and the national death register, and gave an estimate of survival for babies born in 2003. We found no previous studies that have obtained detailed information on survival using UK Cystic Fibrosis Registry data. Jackson and colleagues obtained survival estimates for the US and Ireland using registry data (Jackson et al., 2011). MacKenzie and colleagues used US Cystic Fibrosis Foundation Patient Registry data from 2000 to 2010 to project survival for children born and diagnosed with CF in 2010, accounting for sex, genotype and age at diagnosis (MacKenzie et al., 2014). Previous studies on estimated survival in CF have become out of date or have not accounted for the full range of patient characteristics available at birth. Few have presented conditional survival estimates (Dodge et al., 2007). Added value of this study This is the first study to yield detailed survival statistics using the UK Cystic Fibrosis Registry, which is one of the largest national CF registries outside of the US and has almost complete coverage of the UK CF population. The primary goal was to leverage the long-term follow-up of the nearly complete UK CF population available in the Registry for the purposes of producing accurate, precise predictions in the modern era of CF care. Estimates are presented from birth and conditional on survival to older ages. These are the first conditional estimates in CF to also account for genotype, sex and age at diagnosis, which were each included in the modelling using a flexible approach. Projections are also

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

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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

Risk perception among women receiving genetic counseling: a population-based follow-up study

DEFF Research Database (Denmark)

Mikkelsen, Ellen M; Sunde, Lone; Johansen, Christoffer

2007-01-01

-up study of 213 women who received genetic counseling for hereditary breast and ovarian cancer, 319 women who underwent mammography (Reference Group I), and a random sample of 1070 women from the general population (Reference Group II). RESULTS: Women who received genetic counseling decreased...... counseling, compared to a reduction of 5% (p=0.03) and 2% (p=0.01) in Reference Groups I and II, respectively. Risk communicated only in words, inaccurate risk perception at baseline, and presence of a familial mutation appeared to be predictors of inaccurate risk perception 12 months after counseling......BACKGROUND: We aimed to explore the impact of genetic counseling on perceived personal lifetime risk of breast cancer, the accuracy of risk perception, and possible predictors of inaccurate risk perception 1 year following counseling. METHODS: We conducted a population-based prospective follow...

Nitrate in drinking water and colorectal cancer - a nationwide population-based follow-up study

DEFF Research Database (Denmark)

Schullehner, Jörg; Hansen, Birgitte; Pedersen, Carsten Bøcker

Importance of work and objectives Studies have suggested that nitrate in drinking water increased the risk of colorectal cancer. However, often exposure estimations and study size were insufficient to yield unequivocal results. We addressed these challenges by conducting a detailed exposure...... assessment of the entire Danish population. Methodologies GIS methods were used to assign nitrate concentrations at the waterworks to the 2,779 water supply areas and 55,752 private wells. Annual nitrate concentrations were assigned to each resident of Denmark from 1978-2012, based on their exact address...... in the Civil Registration System. For each person the individual adult exposure (age 20-35) was calculated. Information on colon and rectal cancer diagnoses was obtained from the national Cancer Registry. Cox proportional hazard models using age as time scale were fit to assess the risk within exposure deciles...

Follow-up care of young childhood cancer survivors: attendance and parental involvement.

Science.gov (United States)

Vetsch, Janine; Rueegg, Corina S; Mader, Luzius; Bergstraesser, Eva; Rischewski, Johannes; Kuehni, Claudia E; Michel, Gisela

2016-07-01

Despite recommendations, only a proportion of long-term childhood cancer survivors attend follow-up care. We aimed to (1) describe the follow-up attendance of young survivors aged 11-17 years; (2) describe the parental involvement in follow-up, and (3) investigate predictors of follow-up attendance and parental involvement. As part of the Swiss Childhood Cancer Survivor Study, a follow-up questionnaire was sent to parents of childhood cancer survivors aged 11-17 years. We assessed follow-up attendance of the child, parents' involvement in follow-up, illness perception (Brief IPQ), and sociodemographic data. Clinical data was available from the Swiss Childhood Cancer Registry. Of 309 eligible parents, 189 responded (67 %; mean time since diagnosis 11.3 years, range 6.8-17.2) and 75 % (n = 141) reported that their child still attended follow-up. Of these, 83 % (n = 117) reported ≥1 visit per year and 17 % (n = 23) reported parents (92 %) reported being involved in follow-up (n = 130). In multivariable and Cox regression analyses, longer time since diagnosis (p = 0.025) and lower perceived treatment control (assessed by IPQ4: how much parents thought follow-up can help with late effects; p = 0.009) were associated with non-attendance. Parents' overall information needs was significantly associated with parental involvement in the multivariable model (p = 0.041). Educating survivors and their parents on the importance and effectiveness of follow-up care might increase attendance in the longer term.

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

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

Epidemiology of multiple congenital anomalies in Europe: A EUROCAT population-based registry study

DEFF Research Database (Denmark)

Calzolari, Elisa; Barisic, Ingeborg; Loane, Maria

2014-01-01

BACKGROUND: This study describes the prevalence, associated anomalies, and demographic characteristics of cases of multiple congenital anomalies (MCA) in 19 population-based European registries (EUROCAT) covering 959,446 births in 2004 and 2010. METHODS: EUROCAT implemented a computer algorithm f...

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.

International incidence of childhood cancer, 2001-10: a population-based registry study.

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Steliarova-Foucher, Eva; Colombet, Murielle; Ries, Lynn A G; Moreno, Florencia; Dolya, Anastasia; Bray, Freddie; Hesseling, Peter; Shin, Hee Young; Stiller, Charles A

2017-06-01

Cancer is a major cause of death in children worldwide, and the recorded incidence tends to increase with time. Internationally comparable data on childhood cancer incidence in the past two decades are scarce. This study aimed to provide internationally comparable local data on the incidence of childhood cancer to promote research of causes and implementation of childhood cancer control. This population-based registry study, devised by the International Agency for Research on Cancer in collaboration with the International Association of Cancer Registries, collected data on all malignancies and non-malignant neoplasms of the CNS diagnosed before age 20 years in populations covered by high-quality cancer registries with complete data for 2001-10. Incidence rates per million person-years for the 0-14 years and 0-19 years age groups were age-adjusted using the world standard population to provide age-standardised incidence rates (WSRs), using the age-specific incidence rates (ASR) for individual age groups (0-4 years, 5-9 years, 10-14 years, and 15-19 years). All rates were reported for 19 geographical areas or ethnicities by sex, age group, and cancer type. The regional WSRs for children aged 0-14 years were compared with comparable data obtained in the 1980s. Of 532 invited cancer registries, 153 registries from 62 countries, departments, and territories met quality standards, and contributed data for the entire decade of 2001-10. 385 509 incident cases in children aged 0-19 years occurring in 2·64 billion person-years were included. The overall WSR was 140·6 per million person-years in children aged 0-14 years (based on 284 649 cases), and the most common cancers were leukaemia (WSR 46·4), followed by CNS tumours (WSR 28·2), and lymphomas (WSR 15·2). In children aged 15-19 years (based on 100 860 cases), the ASR was 185·3 per million person-years, the most common being lymphomas (ASR 41·8) and the group of epithelial tumours and melanoma (ASR 39·5

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.

Predictors of mortality among children on Antiretroviral Therapy at a referral hospital, Northwest Ethiopia: A retrospective follow up study

Directory of Open Access Journals (Sweden)

Koye Digsu

2012-10-01

Full Text Available Abstract Background An estimated 2.5 million children were living with HIV/AIDS at the end of 2009, 2.3 million (92% in sub-Saharan Africa. Without treatment, a third of children with HIV will die of AIDS before their first birthday, half dying before two years of age. Hence, this study aimed to assess magnitude and predictors of mortality among children on Antiretroviral Therapy (ART at a referral hospital in North-West Ethiopia. Methods Institution based retrospective follow up study was carried out among HIV-positive children from January 1st, 2006 - March 31st, 2011. Information on relevant variables was collected from patients’ charts and registries. Life table was used to estimate the cumulative survival of children. Log rank tests were employed to compare survival between the different categories of the explanatory variables. Multivariate Cox proportional hazards model was fitted to identify predictors of mortality. Results A total of 549 records were included in the analysis. The mean age at initiation of treatment was 6.35 ±3.78 SD years. The median follow up period was 22 months. At the end of the follow up, 41(7.5% were dead and 384(69.9% were alive. Mortality was 4.0 deaths per 100 child-years of follow-up period. The cumulative probabilities of survival at 3, 6, 12, 24, and 60 months of ART were 0.96, 0.94, 0.93, 0.92 and 0.83 respectively. Majority (90.2% of the deaths occurred within the first year of treatment. Absence of cotrimoxazole preventive therapy (adjusted hazard ratio [AHR] = 4.74, 95% CI: 2.17, 10.34, anaemia (haemoglobin level Conclusions There was a high rate of early mortality. Hence, starting ART very early reduces disease progression and early mortality; close follow up of all children of HIV-positive mothers is recommended to make the diagnosis and start treatment at an earlier time before they develop severe immunodeficiency.

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

High School Longitudinal Study of 2009 (HSLS:09) Base Year to First Follow-Up Data File Documentation. Appendixes. NCES 2014-361

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Ingels, Steven J.; Pratt, Daniel J.; Herget, Deborah R.; Dever, Jill A.; Fritch, Laura Burns; Ottem, Randolph; Rogers, James E.; Kitmitto, Sami; Leinwand, Steve

2013-01-01

The manual that accompanies these appendices was produced to familiarize data users with the design, and the procedures followed for data collection and processing, in the base year and first follow-up of the High School Longitudinal Study of 2009 (HSLS:09), with emphasis on the first follow-up. It also provides the necessary documentation for use…

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.

Sustained effects of a psychoeducational group intervention following bariatric surgery: follow-up of the randomized controlled BaSE study.

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Wild, Beate; Hünnemeyer, Katharina; Sauer, Helene; Schellberg, Dieter; Müller-Stich, Beat Peter; Königsrainer, Alfred; Weiner, Rudolf; Zipfel, Stephan; Herzog, Wolfgang; Teufel, Martin

2017-09-01

Evidence regarding the efficacy of psychosocial interventions after bariatric surgery is rare and shows conflicting results. The Bariatric Surgery and Education (BaSE) study aimed to assess the efficacy of a psychoeducational group intervention in patients after bariatric surgery. The BaSE study was a randomized, controlled, multicenter clinical trial involving 117 patients who underwent bariatric surgery. Patients received either conventional postsurgical visits or, in addition, a 1-year psychoeducational group program. The present study evaluated the sustained effects of the intervention program. Mean follow-up duration was 37.9 months (standard deviation [SD] 8.2 months) after surgery. Outcome measures were as follows: body mass index (BMI), weight loss, self-efficacy, depression severity, and health-related quality of life (HRQOL). Groups were compared using an intention-to-treat approach with a mixed model for repeated measurements. A total of 74 patients (63.2%) completed the follow-up (T5) assessment. Mean weight loss for all patients was 43 kg (SD 15.5 kg) at T5 (mean BMI 35.1 kg/m 2 ). Mean excess weight loss was 60.4%. The effects of the surgery during the first postsurgical year were reflected, on average, by both decreasing weight and psychosocial burden. At the T5 time point, patients had slowly started to regain weight and to deteriorate regarding psychosocial aspects. However, at T5, patients who had participated in the intervention program (n = 39) showed significantly lower depression severity scores (p = .03) and significantly higher self-efficacy (p = .03) compared to the control group (n = 35). The 2 groups did not differ regarding weight loss and quality of life. Psychoeducational intervention shows sustained effects on both depression severity scores and self-efficacy. Copyright © 2017 American Society for Bariatric Surgery. Published by Elsevier Inc. All rights reserved.

Blood pressure response to catheter-based renal sympathetic denervation in severe resistant hypertension: data from the Greek Renal Denervation Registry.

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Tsioufis, C; Ziakas, A; Dimitriadis, K; Davlouros, P; Marketou, M; Kasiakogias, A; Thomopoulos, C; Petroglou, D; Tsiachris, D; Doumas, M; Skalidis, E; Karvounis, C; Alexopoulos, D; Vardas, P; Kallikazaros, I; Stefanadis, C; Papademetriou, V; Tousoulis, D

2017-05-01

The efficacy of catheter-based renal sympathetic denervation (RDN) in terms of blood pressure (BP) reduction has been questioned, while "real-world" data from registries are needed. In this study, we report the complete set of 12-month data on office and ambulatory BP changes as well as the predictors for BP response to RDN from a national registry. In 4 Greek hospital centers, 79 patients with severe drug-resistant hypertension (age 59 ± 10 years, 53 males, body mass index 33 ± 5 kg/m 2 ; office BP and 24-h ambulatory BP were 176 ± 15/95 ± 13 and 155 ± 14/90 ± 12 mmHg, respectively, 4.4 ± 0.9 antihypertensive drugs) underwent RDN and were followed-up for 12 months in the Greek Renal Denervation Registry. Bilateral RDN was performed using percutaneous femoral approach and standardized techniques. Reduction in office systolic/diastolic BP at 6 and 12 months from baseline was -30/-12 and -29/-12 mmHg, while the reduction in 24-h ambulatory BP was -16/-9 and -15/-9 mmHg, respectively (p renal function and any new serious device or procedure-related adverse events. In our "real-world" multicenter national registry, the efficacy of renal denervation in reducing BP as well as safety is confirmed during a 12-month follow-up. Moreover, younger age, obesity, and higher levels of baseline systolic BP are independently related to better BP response to RDN.

[Pediatric cardiovascular surgical data base registry in México. First report].

Science.gov (United States)

Cervantes-Salazar, Jorge; Calderón-Colmenero, Juan; Ramírez-Marroquín, Samuel; Palacios-Macedo, Alexis; Bolio-Cerdán, Alejandro; Vizcaíno Alarcón, Alfredo; Curi-Curi, Pedro; de la Llata, Manuel; Erdmenger-Orellana, Julio; González, Julieta; García-Soriano, Federico; Calderón, Alejandro; Casillas, Luis; Villanueva, Filiberto; Sánchez-Ramírez, Roberto; Osnaya, Héctor; Necoechea, Juan Carlos; Alva-Espinoza, Carlos; Prado-Villegas, Guillermo

2013-01-01

Current world tendency is the detection of health problems in order to offer solution alternatives by means of the development of computarized data bases. To present the results of a computerized data base developed for the registry of pediatric cardiac surgery with the support of Asociación Mexicana de Especialistas en Cardiopatías Congénitas (AMECC, A.C.). A one-year analysis (from August 1, 2011 to July 31, 2012) of a computerized data base was performed with the support of AMECC and the participation of the most important Mexican institutions for pediatric surgical heart disease health care, particularly for the uninsured population. There were 7 health institutions voluntarily incorporated to the national data base registry, and in the first year of observation, 943 surgical procedures in 880 patients and 7% re-operations (n = 63), were reported. Patients up to one-year old accounted for 38%. The most frequent types of operated congenital heart diseases were: patent ductus arteriosus (n = 96), ventricular septal defect (n = 86), tetralogy of Fallot (n = 72), atrial septal defect (n = 68), and aortic coarctation (n = 54). Elective procedures were 90%, and 62% of them were performed with the use of cardiopulmonary bypass. Overall mortality was 7.5% with the following RACHS-1 score risk distribution: 1 (n = 4.2%), 2 (n = 19.6%), 3 (n = 22.8%), 4 (n = 12.19%), 5 (n = 1.25%), 6 (n = 6.44%) and not classifiable (n = 2.9%). Although this analysis gives a representative vision of the cardiovascular surgical health care for the uninsured national pediatric population, the incorporation of other health institutions to this data base may lead us to have a most realistic overview in relation to the surgical cardiovascular health care for the up to 18 year-old population.

The value of gynecologic cancer follow-up

DEFF Research Database (Denmark)

Lajer, Henrik; Jensen, Mette B.; Kilsmark, Jannie

2010-01-01

that follow-up affects the women's quality of life. CONCLUSIONS:: The main purpose of follow-up after treatment of cancer is improved survival. Our review of the literature showed no evidence of a positive effect on survival in women followed up after primary treatment of endometrial or ovarian cancer......INTRODUCTION:: To explore the extent of evidence-based data and cost-utility of follow-up after primary treatment of endometrial and ovarian cancer, addressing perspectives of technology, organization, economics, and patients. METHODS:: Systematic literature searches according......:: None of the identified studies supported a survival benefit from hospital-based follow-up after completion of primary treatment of endometrial or ovarian cancer. The methods for follow-up were of low technology (gynecologic examination with or without ultrasound examination). Other technologies had...

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

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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

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

Follow-up methods for retrospective cohort studies in New Zealand.

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Fawcett, Jackie; Garrett, Nick; Bates, Michael N

2002-01-01

To define a general methodology for maximising the success of follow-up processes for retrospective cohort studies in New Zealand, and to illustrate an approach to developing country-specific follow-up methodologies. We recently conducted a cohort study of mortality and cancer incidence in New Zealand professional fire fighters. A number of methods were used to trace vital status, including matching with records of the New Zealand Health Information Service (NZHIS), pension records of Work and Income New Zealand (WINZ), and electronic electoral rolls. Non-electronic methods included use of paper electoral rolls and the records of the Registrar of Births Deaths and Marriages. 95% of the theoretical person-years of follow-up of the cohort were traced using these methods. In terms of numbers of cohort members traced to end of follow-up, the most useful tracing methods were fire fighter employment records, the NZHIS, WINZ, and the electronic electoral rolls. The follow-up process used for the cohort study was highly successful. On the basis of this experience, we propose a generic, but flexible, model for follow-up of retrospective cohort studies in New Zealand. Similar models could be constructed for other countries. Successful follow-up of cohort studies is possible in New Zealand using established methods. This should encourage the use of cohort studies for the investigation of epidemiological issues. Similar models for follow-up processes could be constructed for other countries.

Contemporary management of patients undergoing atrial fibrillation ablation: in-hospital and 1-year follow-up findings from the ESC-EHRA atrial fibrillation ablation long-term registry.

Science.gov (United States)

Arbelo, Elena; Brugada, Josep; Blomström-Lundqvist, Carina; Laroche, Cécile; Kautzner, Josef; Pokushalov, Evgeny; Raatikainen, Pekka; Efremidis, Michael; Hindricks, Gerhard; Barrera, Alberto; Maggioni, Aldo; Tavazzi, Luigi; Dagres, Nikolaos

2017-05-01

The ESC-EHRA Atrial Fibrillation Ablation Long-Term registry is a prospective, multinational study that aims at providing an accurate picture of contemporary real-world ablation for atrial fibrillation (AFib) and its outcome. A total of 104 centres in 27 European countries participated and were asked to enrol 20-50 consecutive patients scheduled for first and re-do AFib ablation. Pre-procedural, procedural and 1-year follow-up data were captured on a web-based electronic case record form. Overall, 3630 patients were included, of which 3593 underwent an AFib ablation (98.9%). Median age was 59 years and 32.4% patients had lone atrial fibrillation. Pulmonary vein isolation was attempted in 98.8% of patients and achieved in 95-97%. AFib-related symptoms were present in 97%. In-hospital complications occurred in 7.8% and one patient died due to an atrioesophageal fistula. One-year follow-up was performed in 3180 (88.6%) at a median of 12.4 months (11.9-13.4) after ablation: 52.8% by clinical visit, 44.2% by telephone contact and 3.0% by contact with the general practitioner. At 12-months, the success rate with or without antiarrhythmic drugs (AADs) was 73.6%. A significant portion (46%) was still on AADs. Late complications included 14 additional deaths (4 cardiac, 4 vascular, 6 other causes) and 333 (10.7%) other complications. AFib ablation in clinical practice is mostly performed in symptomatic, relatively young and otherwise healthy patients. Overall success rate is satisfactory, but complication rate remains considerable and a significant portion of patients remain on AADs. Monitoring after ablation shows wide variations. Antithrombotic treatment after ablation shows insufficient guideline-adherence. Published on behalf of the European Society of Cardiology. All rights reserved. © The Author 2017. For Permissions, please email: journals.permissions@oup.com.

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.

Smartphone Application WeChat for Clinical Follow-up of Discharged Patients with Head and Neck Tumors: A Randomized Controlled Trial.

Science.gov (United States)

Lyu, Ke-Xing; Zhao, Jing; Wang, Bin; Xiong, Guan-Xia; Yang, Wei-Qiang; Liu, Qi-Hong; Zhu, Xiao-Lin; Sun, Wei; Jiang, Ai-Yun; Wen, Wei-Ping; Lei, Wen-Bin

2016-12-05

Nowadays, social media tools such as short message service, Twitter, video, and web-based systems are more and more used in clinical follow-up, making clinical follow-up much more time- and cost-effective than ever before. However, as the most popular social media in China, little is known about the utility of smartphone WeChat application in follow-up. In this study, we aimed to investigate the feasibility and superiority of WeChat application in clinical follow-up. A total of 108 patients diagnosed with head and neck tumor were randomized to WeChat follow-up (WFU) group or telephone follow-up (TFU) group for 6-month follow-up. The follow-ups were delivered by WeChat or telephone at 2 weeks, 1, 2, 3, and 6 months to the patients after being discharged. The study measurements were time consumption for follow-up delivery, total economic cost, lost-to-follow-up rate, and overall satisfaction for the follow-up method. Time consumption in WFU group for each patient (23.36 ± 6.16 min) was significantly shorter than that in TFU group (42.89 ± 7.15 min) (P smartphone WeChat application was found to be a viable option for follow-up in discharged patients with head and neck tumors. WFU was time-effective, cost-effective, and convenient in communication. This doctor-led follow-up model has the potential to establish a good physician-patient relationship by enhancing dynamic communications and providing individual health instructions. Chinese Clinical Trial Registry, ChiCTR-IOR-15007498; http://www.chictr.org.cn/ showproj.aspx?proj=12613.

Achieving community-based postpartum follow up in eastern Uganda: the field experience from the MamaMiso Study on antenatal distribution of misoprostol

OpenAIRE

Ditai, James; Frye, Laura J.; Durocher, Jill; Byrne, Meagan E.; Ononge, Sam; Winikoff, Beverly; Weeks, Andrew D.

2017-01-01

Background Advance provision of misoprostol to women during antenatal care aims to achieve broader access to uterotonics for the prevention of postpartum hemorrhage. Studies of this community-based approach usually involve antenatal education as well as timely postpartum follow-up visits to confirm maternal and neonatal outcomes. The MamaMiso study in Mbale, Uganda sought to assess the feasibility of conducting follow-up visits in the postpartum period following advance provision of misoprost...

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

British Society of Interventional Radiology (BSIR) Inferior Vena Cava (IVC) Filter Registry

International Nuclear Information System (INIS)

Uberoi, Raman; Tapping, Charles Ross; Chalmers, Nicholas; Allgar, Victoria

2013-01-01

Purpose: The British Society of Interventional Radiology (BSIR) Inferior Vena Cava (IVC) Filter Registry was produced to provide an audit of current United Kingdom (UK) practice regarding placement and retrieval of IVC filters to address concerns regarding their safety. Methods: The IVC filter registry is a web-based registry, launched by the BSIR on behalf of its membership in October 2007. This report is based on prospectively collected data from October 2007 to March 2011. This report contains analysis of data on 1,434 IVC filter placements and 400 attempted retrievals performed at 68 UK centers. Data collected included patient demographics, insertion and retrieval data, and patient follow-up. Results: IVC filter use in the majority of patients in the UK follows accepted CIRSE guidelines. Filter placement is usually a low-risk procedure, with a low major complication rate ( 9 weeks versus those with a shorter dwell time. New lower limb deep vein thrombosis (DVT) and/or IVC thrombosis was reported in 88 patients following filter placement, there was no significant difference of incidence between filter types. Conclusions: This registry report provides interventional radiologists and clinicians with an improved understanding of the technical aspects of IVC filter placement to help improve practice, and the potential consequences of IVC filter placement so that we are better able to advise patients. There is a significant learning curve associated with IVC filter insertion, and when a filter is placed with the intention of removal, procedures should be in place to avoid the patient being lost to follow-up

Effectiveness and side-effects of peptide receptor radionuclide therapy for neuroendocrine neoplasms in Germany: A multi-institutional registry study with prospective follow-up.

Science.gov (United States)

Hörsch, Dieter; Ezziddin, Samer; Haug, Alexander; Gratz, Klaus Friedrich; Dunkelmann, Simone; Miederer, Matthias; Schreckenberger, Mathias; Krause, Bernd Joachim; Bengel, Frank M; Bartenstein, Peter; Biersack, Hans-Jürgen; Pöpperl, Gabriele; Baum, R P

2016-05-01

Monocentric and retrospective studies indicate effectiveness of peptide receptor radionuclide therapy targeting somatostatin receptors of neuroendocrine neoplasms. We assessed overall and progression-free survival and adverse events of peptide receptor radionuclide therapy by a multi-institutional, board certified registry with prospective follow-up in five centres in Germany. A total of 450 patients were included and followed for a mean of 24.4 months. Most patients had progressive low- or intermediate grade neuroendocrine neoplasms and 73% were pretreated with at least one therapy. Primary neuroendocrine neoplasms were mainly derived of pancreas (38%), small bowel (30%), unknown primary (19%) or bronchial system (4%). Patients were treated with Lutetium-177 in 54%, with Yttrium-90 in 17% and with both radionuclides in 29%. Overall and progression-free survival was determined with Kaplan-Meier curves and uni-variate log rank test Cox models. Median overall survival of all patients was 59 (95% confidence interval [CI] 49-68.9) months. Overall survival was significantly inferior in the patients treated with Yttrium-90 solely (hazard ratio, 3.22; 95% CI, 1.83-5.64) compared to any peptide receptor radionuclide therapy with Lutetium-177. Grade II (hazard ratio, 2.06; 95% CI, 0.79-5.32) and grade III (hazard ratio, 4.22; 95% CI, 1.41-12.06) neuroendocrine neoplasms had significantly worse overall survival than grade I neuroendocrine neoplasms. Patients with small neuroendocrine neoplasms of small bowel had significantly increased survival (hazard ratio, 0.39; 95% CI, 0.18-0.87) compared to neuroendocrine neoplasms of other locations. Median progression-free survival was 41 (35.9-46.1) months and significantly inferior in patients treated with Yttrium solely (hazard ratio, 2.7; 95% CI, 1.71-4.55). Complete remission was observed in 5.6% of patients, 22.4% had a partial remission, 47.3% were stable and 4% were progressive as best response. Adverse events of bone marrow

Estimating the effect of current, previous and never use of drugs in studies based on prescription registries

DEFF Research Database (Denmark)

Nielsen, Lars Hougaard; Løkkegaard, Ellen; Andreasen, Anne Helms

2009-01-01

of this misclassification for analysing the risk of breast cancer. MATERIALS AND METHODS: Prescription data were obtained from Danish Registry of Medicinal Products Statistics and we applied various methods to approximate treatment episodes. We analysed the duration of HT episodes to study the ability to identify......PURPOSE: Many studies which investigate the effect of drugs categorize the exposure variable into never, current, and previous use of the study drug. When prescription registries are used to make this categorization, the exposure variable possibly gets misclassified since the registries do...... not carry any information on the time of discontinuation of treatment.In this study, we investigated the amount of misclassification of exposure (never, current, previous use) to hormone therapy (HT) when the exposure variable was based on prescription data. Furthermore, we evaluated the significance...

Rank-based testing of equal survivorship based on cross-sectional survival data with or without prospective follow-up.

Science.gov (United States)

Chan, Kwun Chuen Gary; Qin, Jing

2015-10-01

Existing linear rank statistics cannot be applied to cross-sectional survival data without follow-up since all subjects are essentially censored. However, partial survival information are available from backward recurrence times and are frequently collected from health surveys without prospective follow-up. Under length-biased sampling, a class of linear rank statistics is proposed based only on backward recurrence times without any prospective follow-up. When follow-up data are available, the proposed rank statistic and a conventional rank statistic that utilizes follow-up information from the same sample are shown to be asymptotically independent. We discuss four ways to combine these two statistics when follow-up is present. Simulations show that all combined statistics have substantially improved power compared with conventional rank statistics, and a Mantel-Haenszel test performed the best among the proposal statistics. The method is applied to a cross-sectional health survey without follow-up and a study of Alzheimer's disease with prospective follow-up. © The Author 2015. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Augmented cross-sectional studies with abbreviated follow-up for estimating HIV incidence.

Science.gov (United States)

Claggett, B; Lagakos, S W; Wang, R

2012-03-01

Cross-sectional HIV incidence estimation based on a sensitive and less-sensitive test offers great advantages over the traditional cohort study. However, its use has been limited due to concerns about the false negative rate of the less-sensitive test, reflecting the phenomenon that some subjects may remain negative permanently on the less-sensitive test. Wang and Lagakos (2010, Biometrics 66, 864-874) propose an augmented cross-sectional design that provides one way to estimate the size of the infected population who remain negative permanently and subsequently incorporate this information in the cross-sectional incidence estimator. In an augmented cross-sectional study, subjects who test negative on the less-sensitive test in the cross-sectional survey are followed forward for transition into the nonrecent state, at which time they would test positive on the less-sensitive test. However, considerable uncertainty exists regarding the appropriate length of follow-up and the size of the infected population who remain nonreactive permanently to the less-sensitive test. In this article, we assess the impact of varying follow-up time on the resulting incidence estimators from an augmented cross-sectional study, evaluate the robustness of cross-sectional estimators to assumptions about the existence and the size of the subpopulation who will remain negative permanently, and propose a new estimator based on abbreviated follow-up time (AF). Compared to the original estimator from an augmented cross-sectional study, the AF estimator allows shorter follow-up time and does not require estimation of the mean window period, defined as the average time between detectability of HIV infection with the sensitive and less-sensitive tests. It is shown to perform well in a wide range of settings. We discuss when the AF estimator would be expected to perform well and offer design considerations for an augmented cross-sectional study with abbreviated follow-up. © 2011, The

Long term outcomes data for the Burns Registry of Australia and New Zealand: Is it feasible?

Science.gov (United States)

Gabbe, Belinda J; Cleland, Heather; Watterson, Dina M; Schrale, Rebecca; McRae, Sally; Parker, Christine; Taggart, Susan; Edgar, Dale W

2015-12-01

Incorporating routine and standardised collection of long term outcomes following burn into burn registries would improve the capacity to quantify burn burden and evaluate care. To evaluate methods for collecting the long term functional and quality of life outcomes of burns patients and establish the feasibility of implementing these outcomes into a multi-centre burns registry. Five Burns Registry of Australia and New Zealand (BRANZ) centres participated in this prospective, longitudinal study. Patients admitted to the centres between November 2009 and November 2010 were followed-up at 1, 6, 12 and 24-months after injury using measures of burn specific health, health status, fatigue, itch and return to work. Participants in the study were compared to BRANZ registered patients at the centres over the study timeframe to identify participation bias, predictors of successful follow-up were established using a Generalised Estimating Equation model, and the completion rates by mode of administration were assessed. 463 patients participated in the study, representing 24% of all BRANZ admissions in the same timeframe. Compared to all BRANZ patients in the same timeframe, the median %TBSA and hospital length of stay was greater in the study participants. The follow-up rates were 63% at 1-month, 47% at 6-months; 40% at 12-months, and 21% at 24-months after injury, and there was marked variation in follow-up rates between the centres. Increasing age, greater %TBSA and opt-in centres were associated with greater follow-up. Centres which predominantly used one mode of administration experienced better follow-up rates. The low participation rates, high loss to follow-up and responder bias observed indicate that greater consideration needs to be given to alternative models for follow-up, including tailoring the follow-up protocol to burn severity or type. Copyright © 2015 Elsevier Ltd and ISBI. All rights reserved.

Comparison of interventional cardiology in two European countries: a nationwide Internet based registry study.

Science.gov (United States)

Gudnason, T; Gudnadottir, G S; Lagerqvist, B; Eyjolfsson, K; Nilsson, T; Thorgeirsson, G; Thorgeirsson, G; Andersen, K; James, S

2013-09-30

The practice of interventional cardiology differs between countries and regions. In this study we report the results of the first nation-wide long-term comparison of interventional cardiology in two countries using a common web-based registry. The Swedish Coronary Angiography and Angioplasty Registry (SCAAR) was used to prospectively and continuously collect background-, quality-, and outcome parameters for all coronary angiographies (CA) and percutaneous coronary interventions (PCI) performed in Iceland and Sweden during one year. The rate of CA per million inhabitants was higher in Iceland than in Sweden. A higher proportion of patients had CA for stable angina in Iceland than in Sweden, while the opposite was true for ST elevation myocardial infarction. Left main stem stenosis was more commonly found in Iceland than in Sweden. The PCI rate was similar in the two countries as was the general success rate of PCI, achievement of complete revascularisation and the overall stent use. Drug eluting stents were more commonly used in Iceland (23% vs. 19%). The use of fractional flow reserve (0.2% vs. 10%) and the radial approach (0.6% vs. 33%) was more frequent in Sweden than in Iceland. Serious complications and death were very rare in both countries. By prospectively comparing interventional cardiology in two countries, using a common web based registry online, we have discovered important differences in technique and indications. A discovery such as this can lead to a change in clinical practice and inspire prospective multinational randomised registry trials in unselected, real world populations. Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.

Lost life years attributable to stroke among patients with nonvalvular atrial fibrillation: a nationwide population-based follow-up study

DEFF Research Database (Denmark)

Frost, Lars; Andersen, Ljubica; Johnsen, Søren Paaske

2007-01-01

Registry of Patients from calendar year 1980 to 2002, and no previous or concomitant diagnosis of stroke or heart valve disease. All patients were followed in the Danish National Registry of Patients for occurrence of an incident diagnosis of stroke of any type (ischemic and/or hemorrhagic......AIM: We assessed the number of lost life years attributable to stroke among patients with a hospital diagnosis of nonvalvular atrial fibrillation. METHODS: We identified all patients, aged 40-89 years, with an incident hospital diagnosis of atrial fibrillation or flutter in the Danish National...... lost life years by sex, age, and time to incident stroke after diagnosis of atrial fibrillation, adjusted for conditions of comorbidity and calendar year of diagnosis of atrial fibrillation. RESULTS: The mean loss of life years attributable to incident stroke within 20 years after a first diagnosis...

The importance of complete follow-up for results after femoro-infrapopliteal vascular surgery

DEFF Research Database (Denmark)

Jensen, L P; Nielsen, O M; Schroeder, T V

1996-01-01

intervals and all data have been recorded prospectively in a vascular registry. As part of a randomised trial on adjuvant medication in femorocrural bypass surgery, 102 patients, operated on between 1990 and 1992 were independently and simultaneously monitored. This subgroup was examined at 3 and 12 months...... is lost to follow-up, since failure to examine the patient for any reason may be related to the patients health. In addition to the number of patients at risk, it is suggested, that life-table plots should be supplemented with information on the number of patients lost to follow-up....

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.

Rationale, design and objectives of ARegPKD, a European ARPKD registry study.

Science.gov (United States)

Ebner, Kathrin; Feldkoetter, Markus; Ariceta, Gema; Bergmann, Carsten; Buettner, Reinhard; Doyon, Anke; Duzova, Ali; Goebel, Heike; Haffner, Dieter; Hero, Barbara; Hoppe, Bernd; Illig, Thomas; Jankauskiene, Augustina; Klopp, Norman; König, Jens; Litwin, Mieczyslaw; Mekahli, Djalila; Ranchin, Bruno; Sander, Anja; Testa, Sara; Weber, Lutz Thorsten; Wicher, Dorota; Yuzbasioglu, Ayse; Zerres, Klaus; Dötsch, Jörg; Schaefer, Franz; Liebau, Max Christoph

2015-02-18

Autosomal recessive polycystic kidney disease (ARPKD) is a rare but frequently severe disorder that is typically characterized by cystic kidneys and congenital hepatic fibrosis but displays pronounced phenotypic heterogeneity. ARPKD is among the most important causes for pediatric end stage renal disease and a leading reason for liver-, kidney- or combined liver kidney transplantation in childhood. The underlying pathophysiology, the mechanisms resulting in the observed clinical heterogeneity and the long-term clinical evolution of patients remain poorly understood. Current treatment approaches continue to be largely symptomatic and opinion-based even in most-advanced medical centers. While large clinical trials for the frequent and mostly adult onset autosomal dominant polycystic kidney diseases have recently been conducted, therapeutic initiatives for ARPKD are facing the challenge of small and clinically variable cohorts for which reliable end points are hard to establish. ARegPKD is an international, mostly European, observational study to deeply phenotype ARPKD patients in a pro- and retrospective fashion. This registry study is conducted with the support of the German Society for Pediatric Nephrology (GPN) and the European Study Consortium for Chronic Kidney Disorders Affecting Pediatric Patients (ESCAPE Network). ARegPKD clinically characterizes long-term ARPKD courses by a web-based approach that uses detailed basic data questionnaires in combination with yearly follow-up visits. Clinical data collection is accompanied by associated biobanking and reference histology, thus setting roots for future translational research. The novel registry study ARegPKD aims to characterize miscellaneous subcohorts and to compare the applied treatment options in a large cohort of deeply characterized patients. ARegPKD will thus provide evidence base for clinical treatment decisions and contribute to the pathophysiological understanding of this severe inherited disorder.

Selective mutism: follow-up study 1 year after end of treatment.

Science.gov (United States)

Oerbeck, Beate; Stein, Murray B; Pripp, Are H; Kristensen, Hanne

2015-07-01

Cognitive behavioral therapy (CBT) is generally considered the recommended approach for selective mutism (SM). Prospective follow-up studies of treated SM and predictors of outcome are scarce. We have developed a CBT home and school-based intervention for children with SM previously found to increase speech in a pilot efficacy study and in a randomized controlled treatment study. In the present report we provide outcome data 1 year after having completed the 6-month course of CBT for 24 children with SM, aged 3-9 years (mean age 6.5 years, 16 girls). Primary outcome measures were the teacher rated School Speech Questionnaire (SSQ) and diagnostic status. At follow-up, no significant decline was found on the SSQ scores. Age and severity of SM had a significant effect upon outcome, as measured by the SSQ. Eight children still fulfilled diagnostic criteria for SM, four were in remission, and 12 children were without diagnosis. Younger children improved more, as 78% of the children aged 3-5 years did not have SM, compared with 33% of children aged 6-9 years. Treatment gain was upheld at follow-up. Greater improvement in the younger children highlights the importance of an early intervention.

Long-term outcome of vertigo and dizziness associated disorders following treatment in specialized tertiary care: the Dizziness and Vertigo Registry (DiVeR) Study.

Science.gov (United States)

Obermann, Mark; Bock, Eva; Sabev, Nikolay; Lehmann, Nils; Weber, Ralph; Gerwig, Marcus; Frings, Markus; Arweiler-Harbeck, Diana; Lang, Stephan; Diener, Hans-Christoph

2015-09-01

To investigate the long-term outcome of interdisciplinary treatment in a tertiary care neuro-otology institution after 2 years as part of the Dizziness and Vertigo Registry study. Risk factors associated with unfavourable outcome were assessed. 3113 consecutive patients with disorders of vertigo and dizziness were recruited prospectively between March 2010 and February 2012. Patients were clinically assessed and treated according to their diagnosis. Standardized instruments were used at baseline and at 2-year follow-up [Dizziness Handicap Inventory (DHI), Quality of Life Questionnaire, General Depression Scale, Stait-Trait Anxiety Index], as well as a custom health-related questionnaire. The primary outcome variable of this observational study was the change in DHI after 2 years. Patients suffered from phobic postural vertigo (23%), benign peripheral paroxysmal vertigo (14.4%), unilateral vestibulopathy (10.5%), central vestibular disorders (8%), Menière's disease (9.8%), vestibular migraine (6.9%), bilateral vestibulopathy (5.5%), and vestibular paroxysmia (3.1%). Mean disease duration was 4.6 ± 6.3 years. 1272 patients were available for follow-up, 1159 completed the DHI score. 72.1% of patients improved in DHI score from baseline to 2 years follow-up. Mean reduction in DHI score was 14 points (p = 0.02). Long-term outcome following diagnosis and treatment in a specialized tertiary care centre is good and persistent after 2 years. Risk factors for an unfavourable outcome were advanced age, severe disability, constant vertigo or dizziness, and concomitant back pain, while depression and anxiety did not contribute to this risk considerably.

Achieving community-based postpartum follow up in eastern Uganda: the field experience from the MamaMiso Study on antenatal distribution of misoprostol.

Science.gov (United States)

Ditai, James; Frye, Laura J; Durocher, Jill; Byrne, Meagan E; Ononge, Sam; Winikoff, Beverly; Weeks, Andrew D

2017-10-26

Advance provision of misoprostol to women during antenatal care aims to achieve broader access to uterotonics for the prevention of postpartum hemorrhage. Studies of this community-based approach usually involve antenatal education as well as timely postpartum follow-up visits to confirm maternal and neonatal outcomes. The MamaMiso study in Mbale, Uganda sought to assess the feasibility of conducting follow-up visits in the postpartum period following advance provision of misoprostol for postpartum hemorrhage prevention. MamaMiso recruited women during antenatal care visits. Participants were asked to contact the research team within 48 h of giving birth so that postpartum follow-up visits could be carried out at their homes. Women's baseline and delivery characteristics were collected and analyzed with respect to follow-up time ('on time' ≤ 7 days, 'late' > 7 days, and 'lost to follow up'). Every woman who was followed up late due to a failure to report the delivery was asked for the underlying reasons for the delay. When attempts at following up participants were unsuccessful, a file note was generated explaining the details of the failure. We abstracted data and identified themes from these notes. Of 748 recruited women, 700 (94%) were successfully followed up during the study period, 465 (62%) within the first week postpartum. The median time to follow up was 4 days and was similar for women who delivered at home or in facilities and for women who had attended or unattended births. Women recruited at the urban hospital site (as opposed to rural health clinics) were more likely to be lost to follow up or followed up late. Of the women followed up late, 202 provided a reason. File notes explaining failed attempts at follow up were generated for 164 participants. Several themes emerged from qualitative analysis of these notes including phone difficulties, inaccurate baseline information, misperceptions, postpartum travel, and the condition of the mother

Follow up study of Alzheimer's type dementia with computed tomography

International Nuclear Information System (INIS)

Hirata, Nobuhide

1987-01-01

In 54 patients who were diagnosed as having Alzheimer's type dementia based on the Diagnostic and Statistical Manual of Mental Disorders, III, cranial computed tomography (CT) scans were obtained before and after their follow-up study ranging from 6 to 24 months (mean 15.4 +- 4.7 months). Cerebrospinal percentage and CT density in various regions of interest were examined. Six patients died during the study. Comparison of the group of the deceased (Group I) with the group of survivors (Group II) revealed: (1) there was no difference in average age and the degree of mental disorder at first presentation; (2) Group I had decreased activities of daily living; and (3) CT density was significantly decreased in the bilateral lateral and frontal lobes in Group I. As for Group II, decreased CT numbers were noticeable during the follow-up period in the frontal lobe, parietal lobe, and caudate nucleus in the group evaluated as aggravated, as compared with the group evaluated as unchanged. (Namekawa, K.)

Towards sustainability assessment follow-up

Energy Technology Data Exchange (ETDEWEB)

Morrison-Saunders, Angus, E-mail: a.morrison-saunders@murdoch.edu.au [Murdoch University (Australia); North-West University (South Africa); Pope, Jenny, E-mail: jenny@integral-sustainability.net [North-West University (South Africa); Integral Sustainability (Australia); Curtin University (Australia); Bond, Alan, E-mail: alan.bond@uea.ac.uk [North-West University (South Africa); University of East Anglia (United Kingdom); Retief, Francois, E-mail: francois.retief@nwu.ac.za [North-West University (South Africa)

2014-02-15

This paper conceptualises what sustainability assessment follow-up might entail for three models of sustainability assessment: EIA-driven integrated assessment, objectives-led integrated assessment and the contribution to sustainability model. The first two are characterised by proponent monitoring and evaluation of individual impacts and indicators while the latter takes a holistic view based around focused sustainability criteria relevant to the context. The implications of three sustainability challenges on follow-up are also examined: contested time horizons and value changes, trade-offs, and interdisciplinarity. We conclude that in order to meet these challenges some form of adaptive follow-up is necessary and that the contribution to sustainability approach is the best approach. -- Highlights: • We explore sustainability follow-up for three different sustainability models. • Long-time frames require adaptive follow-up and are a key follow-up challenge. • Other key challenges include interdisciplinarity, and trade-offs. • Sustainability follow-up should be a direction of travel and not an outcome. • Only the follow-up for contribution to sustainability model addresses sustainability challenges sufficiently.

Towards sustainability assessment follow-up

International Nuclear Information System (INIS)

Morrison-Saunders, Angus; Pope, Jenny; Bond, Alan; Retief, Francois

2014-01-01

This paper conceptualises what sustainability assessment follow-up might entail for three models of sustainability assessment: EIA-driven integrated assessment, objectives-led integrated assessment and the contribution to sustainability model. The first two are characterised by proponent monitoring and evaluation of individual impacts and indicators while the latter takes a holistic view based around focused sustainability criteria relevant to the context. The implications of three sustainability challenges on follow-up are also examined: contested time horizons and value changes, trade-offs, and interdisciplinarity. We conclude that in order to meet these challenges some form of adaptive follow-up is necessary and that the contribution to sustainability approach is the best approach. -- Highlights: • We explore sustainability follow-up for three different sustainability models. • Long-time frames require adaptive follow-up and are a key follow-up challenge. • Other key challenges include interdisciplinarity, and trade-offs. • Sustainability follow-up should be a direction of travel and not an outcome. • Only the follow-up for contribution to sustainability model addresses sustainability challenges sufficiently

Significance of atypia in conventional Papanicolaou smears and liquid-based cytology: a follow-up study

DEFF Research Database (Denmark)

Schledermann, D; Ejersbo, D; Hoelund, B

2004-01-01

The diagnosis of atypical squamous epithelial cells, borderline nuclear changes, is associated with some controversy, as it encompasses benign, reactive, as well as possible neoplastic conditions. The aim of this study was to evaluate the follow-up diagnoses of cytological atypia in conventional...... cytological samples was reduced by 41.3% (P Cytological and histological follow-up data showed the presence of neoplastic lesions in 34.7% of patients screened by TP versus 22.3% of patients screened by CP, corresponding to a 55.6% increase in TP (P

Spinal cord injury and Parkinson's disease: a population-based, propensity score-matched, longitudinal follow-up study.

Science.gov (United States)

Yeh, T-S; Huang, Y-P; Wang, H-I; Pan, S-L

2016-12-01

To investigate whether patients with spinal cord injury (SCI) are at an increased risk of developing Parkinson's disease (PD). A population-based, propensity score-matched, longitudinal follow-up cohort study. The study was conducted using the National Health Insurance (NHI) Research Database. A total of 10 125 patients with at least 2 ambulatory visits with a diagnosis of SCI in 2001 were enrolled in the SCI group. The non-SCI group comprised 10 125 propensity score-matched patients without SCI. The propensity scores were computed using a logistic regression model that included age, sex, comorbidities and socioeconomic status. The PD-free survival rates of the two groups were estimated using the Kaplan-Meier method. Stratified Cox proportional hazard regression was used to estimate the effect of SCI on subsequent occurrence of PD. During the 3-year follow-up period, 99 subjects in the SCI group and 59 in the non-SCI group developed PD. The hazard ratio of PD for the SCI group compared with the non-SCI group was 1.65 (95% confidence interval 1.16-2.33, P=0.0049). The PD-free survival rate for the SCI group was lower than that for the non-SCI group (P=0.0017). This study shows that SCI is associated with a subsequent increased risk of PD. Further studies are needed to elucidate the mechanism underlying this association.

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

Follow-up in Childhood Functional Constipation

DEFF Research Database (Denmark)

Modin, Line; Walsted, Anne-Mette; Rittig, Charlotte Siggaard

2016-01-01

OBJECTIVES: Guidelines recommend close follow-up during treatment of childhood functional constipation. Only sparse evidence exists on how follow-up is best implemented. Our aim was to evaluate if follow-up by phone or self-management through web-based information improved treatment outcomes....... METHODS: In this randomized, controlled trial, conducted in secondary care, 235 children, aged 2-16 years, who fulfilled the Rome III criteria of childhood constipation, were assigned to one of three follow-up regimens: (I) control group (no scheduled contact), (II) phone group (2 scheduled phone contacts......: Improved self-management behavior caused by access to self-motivated web-based information induced faster short-term recovery during treatment of functional constipation. Patient empowerment rather than health care promoted follow-up might be a step towards more effective treatment for childhood...

Nimh Treatment Study of ADHD Follow-Up

Directory of Open Access Journals (Sweden)

J Gordon Millichap

2004-04-01

Full Text Available The effects of changes in medication use between 14 and 24 months follow-up on effectiveness (symptom ratings and growth (height and weight measures were analyzed, comparing 4 groups of patients, in the Multimodal Treatment Study of ADHD (MTA reported by the MTA Cooperative Group.

A Nation-Wide Cancer Registry-Based Study of Adenosquamous Carcinoma in Taiwan.

Directory of Open Access Journals (Sweden)

Yuan-Tzu Lan

Full Text Available Adenosquamous carcinoma (ASC is a rare disease involving various organs, yet there are no large-scale population-based comparative studies on ASC among different organs.The incidence and overall survival of ASC among various organs in cases diagnosed in Taiwan from January 1, 2003 to December 31, 2010 were calculated and compared using data from the Taiwan Cancer Registry (TCR. The various organs were classified and divided into three different systems: the female reproductive, respiratory, and alimentary systems. Survival analysis were also compared among 30,850 patients diagnosed as ASC, adenocarcinoma (AC or squamous cell carcinoma (SCC in organs with frequent ASC.During the study period, a total of 576 ASC cases were diagnosed in Taiwan. The most common primary system was respiratory (73.8%, followed by alimentary (16.2% and female reproductive (10%. The overall survival were significantly higher for cases involving the female reproductive system, followed by the respiratory and alimentary systems (P = 0.016. The median overall survival were worse in males than females for cases involving the respiratory system (22.4 vs. 31.8 months, P = 0.044. Multivariate analysis showed that age ≧ 65, more advanced T and N categories were independent unfavorable prognostic factors of overall survival in ASC. ASC histology is an independent unfavorable prognostic factor compared with AC and SCC.ASC at an old age and more advanced T and N categories were found to be associated with a poor prognosis.

A Nation-Wide Cancer Registry-Based Study of Adenosquamous Carcinoma in Taiwan

Science.gov (United States)

Lan, Yuan-Tzu; Huang, Kuo-Hung; Liu, Chien-An; Tai, Ling-Chen; Chen, Ming-Huang; Chao, Yee; Li, Anna Fen-Yau; Chiou, Shih-Hwa; Shyr, Yi-Ming; Wu, Chew-Wun; Fang, Wen-Liang

2015-01-01

Background Adenosqamous carcinoma (ASC) is a rare disease involving various organs, yet there are no large-scale population-based comparative studies on ASC among different organs. Methods The incidence and overall survival of ASC among various organs in cases diagnosed in Taiwan from January 1, 2003 to December 31, 2010 were calculated and compared using data from the Taiwan Cancer Registry (TCR). The various organs were classified and divided into three different systems: the female reproductive, respiratory, and alimentary systems. Survival analysis were also compared among 30,850 patients diagnosed as ASC, adenocarcinoma (AC) or squamous cell carcinoma (SCC) in organs with frequent ASC. Results During the study period, a total of 576 ASC cases were diagnosed in Taiwan. The most common primary system was respiratory (73.8%), followed by alimentary (16.2%) and female reproductive (10%). The overall survival were significantly higher for cases involving the female reproductive system, followed by the respiratory and alimentary systems (P = 0.016). The median overall survival were worse in males than females for cases involving the respiratory system (22.4 vs. 31.8 months, P = 0.044). Multivariate analysis showed that age≧65, more advanced T and N categories were independent unfavorable prognostic factors of overall survival in ASC. ASC histology is an independent unfavorable prognostic factor compared with AC and SCC. Conclusions ASC at an old age and more advanced T and N categories were found to be associated with a poor prognosis. PMID:26445240

Radiographic follow-up study of Little Leaguer's shoulder

International Nuclear Information System (INIS)

Kanematsu, Yoshiji; Iwase, Takenobu; Matsuura, Tetsuya; Suzue, Naoto; Sairyo, Koichi; Kashiwaguchi, Shinji; Iwame, Toshiyuki

2015-01-01

Little Leaguer's shoulder is a syndrome involving the proximal humeral epiphyseal plate. Conservative treatment usually resolves the symptoms. However, there are no reports of a radiographic follow-up study of this disease. The purpose of this study was to show the radiographic healing process of Little Leaguer's shoulder. A total of 19 male baseball players diagnosed as having Little Leaguer's shoulder were retrospectively evaluated. The mean age at first presentation was 12.7 years. External rotation anteroposterior radiographs of the shoulder were taken. All patients were treated with rest from throwing, and no throwing was recommended until remodeling was confirmed. Follow-up radiographs were taken at 1-month intervals to assess healing. All patients were observed until healing was confirmed radiographically, after which they returned to baseball. The mean follow-up period was 8.5 months. In addition to radiography, patients were asked whether they had any symptoms and whether they had been able to return to baseball. At the first examination, radiographs showed a wider epiphyseal plate of the throwing side compared with the asymptomatic contralateral shoulder. Healing was observed in all cases. Healing occurred first along the medial side and was then extended laterally. The mean time required for healing was 4.7 months. All patients were able to return to playing baseball at their pre-injury level of play and were asymptomatic when examined at the final follow-up. The healing process of Little Leaguer's shoulder advanced from medial to lateral, and healing was achieved about 5 months after initial examination. (orig.)

Biodegradable-Polymer Biolimus-Eluting Stents versus Durable-Polymer Everolimus-Eluting Stents at One-Year Follow-Up: A Registry-Based Cohort Study.

Science.gov (United States)

Parsa, Ehsan; Saroukhani, Sepideh; Majlessi, Fereshteh; Poorhosseini, Hamidreza; Lofti-Tokaldany, Masoumeh; Jalali, Arash; Salarifar, Mojtaba; Nematipour, Ebrahim; Alidoosti, Mohammad; Aghajani, Hassan; Amirzadegan, Alireza; Kassaian, Seyed Ebrahim

2016-04-01

We compared outcomes of percutaneous coronary intervention patients who received biodegradable-polymer biolimus-eluting stents with those who received durable-polymer everolimus-eluting stents. At Tehran Heart Center, we performed a retrospective analysis of the data from January 2007 through December 2011 on 3,270 consecutive patients with coronary artery disease who underwent percutaneous coronary intervention with the biodegradable-polymer biolimus-eluting stent or the durable-polymer everolimus-eluting stent. We excluded patients with histories of coronary artery bypass grafting or percutaneous coronary intervention, acute ST-segment-elevation myocardial infarction, or the implantation of 2 different stent types. Patients were monitored for 12 months. The primary endpoint was a major adverse cardiac event, defined as a composite of death, nonfatal myocardial infarction, and target-vessel and target-lesion revascularization. Durable-polymer everolimus-eluting stents were implanted in 2,648 (81%) and biodegradable-polymer biolimus-eluting stents in 622 (19%) of the study population. There was no significant difference between the 2 groups (2.7% vs 2.7%; P=0.984) in the incidence of major adverse cardiac events. The cumulative adjusted probability of major adverse cardiac events in the biodegradable-polymer biolimus-eluting stent group did not differ from that of such events in the durable-polymer everolimus-eluting stent group (hazard ratio=0.768; 95% confidence interval, 0.421-1.44; P=0.388). We conclude that in our patients the biodegradable-polymer biolimus-eluting stent was as effective and safe, during the 12-month follow-up period, as was the durable-polymer everolimus-eluting stent.

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

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

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.

Instantaneous Wave-Free Ratio versus Fractional Flow Reserve guided intervention (iFR-SWEDEHEART): Rationale and design of a multicenter, prospective, registry-based randomized clinical trial.

Science.gov (United States)

Götberg, Matthias; Christiansen, Evald H; Gudmundsdottir, Ingibjörg; Sandhall, Lennart; Omerovic, Elmir; James, Stefan K; Erlinge, David; Fröbert, Ole

2015-11-01

Instantaneous wave-free ratio (iFR) is a new hemodynamic resting index for assessment of coronary artery stenosis severity. iFR uses high frequency sampling to calculate a gradient across a coronary lesion during a period of diastole. The index has been tested against fractional flow reserve (FFR) and found to have an overall classification agreement of 80% to 85%. Whether the level of disagreement is clinically relevant is unknown. Clinical outcome data on iFR are scarce. This study is a registry-based randomized clinical trial, which is a novel strategy using health quality registries as on-line platforms for randomization, case record forms, and follow-up. iFR-SWEDEHEART is a multicenter, prospective, randomized, controlled, clinical open-label clinical trial. Two thousand patients with stable angina or acute coronary syndrome and an indication for physiology-guided assessment of one or more coronary stenoses will be randomized 1:1 to either iFR- or FFR-guided intervention. The randomization will be conducted online in the Swedish web-based system for enhancement and development of evidence-based care in heart disease evaluated according to recommended therapies (SWEDEHEART) registry. The trial has a non-inferiority design, with a primary combined end point of all-cause death, non-fatal myocardial infarction, and unplanned revascularization at 12 months. End points will be identified through national registries and undergo central blind adjudication to ensure data quality. The iFR-SWEDEHEART trial is an registry-based randomized clinical trial evaluating the safety and efficacy of the diagnostic method iFR compared to FFR. Copyright © 2015 Elsevier Inc. All rights reserved.

A five-year follow-up study of Swedish adults with gender identity disorder.

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Johansson, Annika; Sundbom, Elisabet; Höjerback, Torvald; Bodlund, Owe

2010-12-01

This follow-up study evaluated the outcome of sex reassignment as viewed by both clinicians and patients, with an additional focus on the outcome based on sex and subgroups. Of a total of 60 patients approved for sex reassignment, 42 (25 male-to-female [MF] and 17 female-to-male [FM]) transsexuals completed a follow-up assessment after 5 or more years in the process or 2 or more years after completed sex reassignment surgery. Twenty-six (62%) patients had an early onset and 16 (38%) patients had a late onset; 29 (69%) patients had a homosexual sexual orientation and 13 (31%) patients had a non-homosexual sexual orientation (relative to biological sex). At index and follow-up, a semi-structured interview was conducted. At follow-up, 32 patients had completed sex reassignment surgery, five were still in process, and five-following their own decision-had abstained from genital surgery. No one regretted their reassignment. The clinicians rated the global outcome as favorable in 62% of the cases, compared to 95% according to the patients themselves, with no differences between the subgroups. Based on the follow-up interview, more than 90% were stable or improved as regards work situation, partner relations, and sex life, but 5-15% were dissatisfied with the hormonal treatment, results of surgery, total sex reassignment procedure, or their present general health. Most outcome measures were rated positive and substantially equal for MF and FM. Late-onset transsexuals differed from those with early onset in some respects: these were mainly MF (88 vs. 42%), older when applying for sex reassignment (42 vs. 28 years), and non-homosexually oriented (56 vs. 15%). In conclusion, almost all patients were satisfied with the sex reassignment; 86% were assessed by clinicians at follow-up as stable or improved in global functioning.

Therapeutic abortion follow-up study.

Science.gov (United States)

Margolis, A J; Davison, L A; Hanson, K H; Loos, S A; Mikkelsen, C M

1971-05-15

To determine the long-range psychological effects of therapeutic abortion, 50 women (aged from 13-44 years), who were granted abortions between 1967 and 1968 Because of possible impairment of mental and/or physical health, were analyzed by use of demographic questionnaires, psychological tests, and interviews. Testing revealed that 44 women had psychiatric problems at time of abortion. 43 patients were followed for 3-6 months. The follow-up interviews revealed that 29 patients reacted positively after abortion, 10 reported no significant change and 4 reacted negatively. 37 would definitely repeat the abortion. Women under 21 years of age felt substantially more ambivalent and guilty than older patients. A study of 36 paired pre- and post-abortion profiles showed that 15 initially abnormal tests had become normal. There was a significant increase in contraceptive use among the patients after the abortion, but 4 again became pregnant and 8 were apparently without consistent contraception. It is concluded that the abortions were therapeutic, but physicians are encouraged to be aware of psychological problems in abortion cases. Strong psychological and contraceptive counselling should be exercised.

Chronic Heart Failure Follow-up Management Based on Agent Technology.

Science.gov (United States)

Mohammadzadeh, Niloofar; Safdari, Reza

2015-10-01

Monitoring heart failure patients through continues assessment of sign and symptoms by information technology tools lead to large reduction in re-hospitalization. Agent technology is one of the strongest artificial intelligence areas; therefore, it can be expected to facilitate, accelerate, and improve health services especially in home care and telemedicine. The aim of this article is to provide an agent-based model for chronic heart failure (CHF) follow-up management. This research was performed in 2013-2014 to determine appropriate scenarios and the data required to monitor and follow-up CHF patients, and then an agent-based model was designed. Agents in the proposed model perform the following tasks: medical data access, communication with other agents of the framework and intelligent data analysis, including medical data processing, reasoning, negotiation for decision-making, and learning capabilities. The proposed multi-agent system has ability to learn and thus improve itself. Implementation of this model with more and various interval times at a broader level could achieve better results. The proposed multi-agent system is no substitute for cardiologists, but it could assist them in decision-making.

Short-term diagnostic stability of probable headache disorders based on the International Classification of Headache Disorders, 3rd edition beta version, in first-visit patients: a multicenter follow-up study.

Science.gov (United States)

Kim, Byung-Su; Moon, Heui-Soo; Sohn, Jong-Hee; Cha, Myong-Jin; Song, Tae-Jin; Kim, Jae-Moon; Park, Jeong Wook; Park, Kwang-Yeol; Cho, Soo-Jin; Kim, Soo-Kyoung

2016-01-01

A "Probable headache disorder" is diagnosed when a patient's headache fulfills all but one criterion of a headache disorder in the 3rd beta edition of the International Classification of Headache Disorder (ICHD-3β). We investigated diagnostic changes in probable headache disorders in first-visit patients after at least 3 months of follow-up. This was a longitudinal study using a prospective headache registry from nine headache clinics of referral hospitals. The diagnostic change of probable headache disorders at baseline was assessed at least 3 months after the initial visit using ICHD-3β. Of 216 patients with probable headache disorders at baseline, the initial probable diagnosis remained unchanged for 162 (75.0 %) patients, while it progressed to a definite diagnosis within the same headache subtype for 45 (20.8 %) by fulfilling the criteria during a median follow-up period of 6.5 months. Significant difference on the proportions of constant diagnosis was not found between headache subtypes (P headache (TTH), and 76.0 % for probable other primary headache disorders (OPHD). Among patients with headache recurrence, the proportion of constant diagnosis was higher for probable migraine than for probable TTH plus probable OPHD (59.2 vs. 23.1 %; P 3 and ≤ 6 months vs. > 6 and ≤ 10 months) in probable migraine, probable TTH, and probable OPHD, respectively. In this study, a probable headache diagnosis, based on ICHD-3β, remained in approximately three-quarters of the outpatients; however, diagnostic stability could differ by headache recurrence and subtype. Probable headache management might have to consider these differences.

Loss to follow-up in an international, multicentre observational study

DEFF Research Database (Denmark)

Mocroft, A; Kirk, O; Aldins, P

2008-01-01

OBJECTIVE: The aim of this work was to assess loss to follow-up (LTFU) in EuroSIDA, an international multicentre observational cohort study. METHODS: LTFU was defined as no follow-up visit, CD4 cell count measurement or viral load measurement after 1 January 2006. Poisson regression was used...

Longitudinal course and outcome of chronic insomnia in Hong Kong Chinese children: a 5-year follow-up study of a community-based cohort.

Science.gov (United States)

Zhang, Jihui; Lam, Siu Ping; Li, Shirley Xin; Li, Albert Martin; Lai, Kelly Y C; Wing, Yun-Kwok

2011-10-01

There are limited data on the long-term outcome of childhood insomnia. We explored the longitudinal course, predictors, and impact of childhood insomnia in a community-based cohort. 5-year prospective follow-up. Community-based. 611 children (49% boys) aged 9.0 ± 1.8 years at baseline; 13.7 ± 1.8 years at follow-up. NA. Chronic insomnia was defined as difficulty initiating sleep, difficulty maintaining sleep and/or early morning awakening ≥ 3 times/week in the past 12 months. General health, upper airway inflammatory diseases, and behavioral problems in recent one year were assessed at both time points, while mental health and lifestyle practice were assessed at follow-up study. The questionnaires at baseline and follow-up were reported by parents/caretakers and adolescents themselves, respectively. The prevalence of chronic insomnia was 4.2% and 6.6% for baseline and follow-up, respectively. The incidence and persistence rates of chronic insomnia were 6.2% and 14.9%, respectively. New incidence of insomnia was associated with lower paternal education level, baseline factors of frequent temper outbursts and daytime fatigue as well as alcohol use and poor mental health at follow-up. Baseline chronic medical disorders, frequent temper outbursts, and poor mental health at follow-up were associated with the persistence of insomnia in adolescents. Baseline insomnia was associated with frequent episodes of laryngopharyngitis and lifestyle practice (coffee and smoking) at follow-up. Chronic insomnia is a common problem with moderate persistent rate in children. The associations of adverse physical and mental health consequences with maladaptive lifestyle coping (smoking and alcohol) argue for rigorous intervention of childhood insomnia.

Alzheimer's Disease Sequencing Project discovery and replication criteria for cases and controls: Data from a community-based prospective cohort study with autopsy follow-up.

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Crane, Paul K; Foroud, Tatiana; Montine, Thomas J; Larson, Eric B

2017-12-01

The Alzheimer's Disease Sequencing Project (ADSP) used different criteria for assigning case and control status from the discovery and replication phases of the project. We considered data from a community-based prospective cohort study with autopsy follow-up where participants could be categorized as case, control, or neither by both definitions and compared the two sets of criteria. We used data from the Adult Changes in Thought (ACT) study including Diagnostic and Statistical Manual-IV criteria for dementia status, McKhann et al. criteria for clinical Alzheimer's disease, and Braak and Consortium to Establish a Registry for AD findings on neurofibrillary tangles and neuritic plaques to categorize the 621 ACT participants of European ancestry who died and came to autopsy. We applied ADSP discovery and replication definitions to identify controls, cases, and people who were neither controls nor cases. There was some agreement between the discovery and replication definitions. Major areas of discrepancy included the finding that only 40% of the discovery sample controls had sufficiently low levels of neurofibrillary tangles and neuritic plaques to be considered controls by the replication criteria and the finding that 16% of the replication phase cases were diagnosed with non-AD dementia during life and thus were excluded as cases for the discovery phase. These findings should inform interpretation of genetic association findings from the ADSP. Differences in genetic association findings between the two phases of the study may reflect these different phenotype definitions from the discovery and replication phase of the ADSP. Copyright © 2017 the Alzheimer's Association. Published by Elsevier Inc. All rights reserved.

Computerized Working-Memory Training for Children Following Arterial Ischemic Stroke: A Pilot Study With Long-Term Follow-Up.

Science.gov (United States)

Eve, Megan; O'Keeffe, Fiadhnait; Jhuty, Simren; Ganesan, Vijeya; Brown, Gary; Murphy, Tara

2016-01-01

Cognitive deficits in the domains of working memory (WM) and executive function are well documented following childhood arterial ischemic stroke (AIS). However, there are currently no evidence-based cognitive interventions for this population. Computerized, implicit WM training has been demonstrated to generate generalized cognitive gains for children with WM and attention deficits and for adults following brain injury. This study used a pilot design to investigate the efficacy and feasibility of such an intervention program (Cogmed WM Training) for a childhood AIS population. Outcomes were measured via psychometric assessment at preintervention and postintervention and again at 1-year follow-up. At longitudinal follow-up, participants were found to have significant and persistent cognitive difficulties, particularly with attention and response inhibition. Following the computerized, implicit WM intervention, a significant improvement in phonological-loop WM was seen; however, this improvement was not maintained after 12 months. No additional significant improvements on standardized psychometric outcome measures were seen either immediately or at 12-month follow-up. Findings of this pilot study therefore do not currently support Cogmed as an effective intervention for children with AIS but highlight the need for further research, including randomized, controlled trials, to investigate cognitive interventions for the childhood AIS population.

Marker-based or model-based RSA for evaluation of hip resurfacing arthroplasty? A clinical validation and 5-year follow-up.

Science.gov (United States)

Lorenzen, Nina Dyrberg; Stilling, Maiken; Jakobsen, Stig Storgaard; Gustafson, Klas; Søballe, Kjeld; Baad-Hansen, Thomas

2013-11-01

The stability of implants is vital to ensure a long-term survival. RSA determines micro-motions of implants as a predictor of early implant failure. RSA can be performed as a marker- or model-based analysis. So far, CAD and RE model-based RSA have not been validated for use in hip resurfacing arthroplasty (HRA). A phantom study determined the precision of marker-based and CAD and RE model-based RSA on a HRA implant. In a clinical study, 19 patients were followed with stereoradiographs until 5 years after surgery. Analysis of double-examination migration results determined the clinical precision of marker-based and CAD model-based RSA, and at the 5-year follow-up, results of the total translation (TT) and the total rotation (TR) for marker- and CAD model-based RSA were compared. The phantom study showed that comparison of the precision (SDdiff) in marker-based RSA analysis was more precise than model-based RSA analysis in TT (p CAD RSA analysis (p = 0.002), but showed no difference between the marker- and CAD model-based RSA analysis regarding the TR (p = 0.91). Comparing the mean signed values regarding the TT and the TR at the 5-year follow-up in 13 patients, the TT was lower (p = 0.03) and the TR higher (p = 0.04) in the marker-based RSA compared to CAD model-based RSA. The precision of marker-based RSA was significantly better than model-based RSA. However, problems with occluded markers lead to exclusion of many patients which was not a problem with model-based RSA. HRA were stable at the 5-year follow-up. The detection limit was 0.2 mm TT and 1° TR for marker-based and 0.5 mm TT and 1° TR for CAD model-based RSA for HRA.

Increased risk of ischemic stroke in young patients with ankylosing spondylitis: a population-based longitudinal follow-up study.

Science.gov (United States)

Lin, Chia-Wei; Huang, Ya-Ping; Chiu, Yueh-Hsia; Ho, Yu-Tsun; Pan, Shin-Liang

2014-01-01

Prospective data on the association between ischemic stroke and ankylosing spondylitis (AS) in the young are sparse. The purpose of this population-based, age- and sex-matched longitudinal follow-up study was to investigate the risk of developing ischemic stroke in young patients with AS. A total of 4562 patients aged 18- to 45-year-old with at least two ambulatory visits in 2001 with a principal diagnosis of AS were enrolled in the AS group. The non-AS group consisted of 22810 age- and sex-matched, randomly sampled subjects without AS. The two-year ischemic stroke-free survival rate for each group were calculated using the Kaplan-Meier method. Cox proportional hazards regression analysis was used to estimate the hazard ratio of ischemic stroke after adjusting for demographic and clinical covariates. During follow-up, 21 patients in the AS group and 53 in the non-AS group developed ischemic stroke. The ischemic stroke-free survival rate over the 2 year follow-up was lower in the AS group than the non-AS group (p = 0.0021). The crude hazard ratio of ischemic stroke for the AS group was 1.98 (95% CI, 1.20-3.29; p = 0.0079) and the adjusted hazard ratio after controlling for demographic and comorbid medical disorders was 1.93 (95% CI, 1.16-3.20; p = 0.0110). Our study showed an increased risk of developing ischemic stroke in young patients with AS.

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.

Cost-Effective Mobile-Based Healthcare System for Managing Total Joint Arthroplasty Follow-Up.

Science.gov (United States)

Bitsaki, Marina; Koutras, George; Heep, Hansjoerg; Koutras, Christos

2017-01-01

Long-term follow-up care after total joint arthroplasty is essential to evaluate hip and knee arthroplasty outcomes, to provide information to physicians and improve arthroplasty performance, and to improve patients' health condition. In this paper, we aim to improve the communication between arthroplasty patients and physicians and to reduce the cost of follow-up controls based on mobile application technologies and cloud computing. We propose a mobile-based healthcare system that provides cost-effective follow-up controls for primary arthroplasty patients through questions about symptoms in the replaced joint, questionnaires (WOMAC and SF-36v2) and the radiological examination of knee or hip joint. We also perform a cost analysis for a set of 423 patients that were treated in the University Clinic for Orthopedics in Essen-Werden. The estimation of healthcare costs shows significant cost savings (a reduction of 63.67% for readmission rate 5%) in both the University Clinic for Orthopedics in Essen-Werden and the state of North Rhine-Westphalia when the mobile-based healthcare system is applied. We propose a mHealth system to reduce the cost of follow-up assessments of arthroplasty patients through evaluation of diagnosis, self-monitoring, and regular review of their health status.

Ginkgo biloba extract and long-term cognitive decline: a 20-year follow-up population-based study.

Directory of Open Access Journals (Sweden)

Hélène Amieva

Full Text Available Numerous studies have looked at the potential benefits of various nootropic drugs such as Ginkgo biloba extract (EGb761®; Tanakan® and piracetam (Nootropyl® on age-related cognitive decline often leading to inconclusive results due to small sample sizes or insufficient follow-up duration. The present study assesses the association between intake of EGb761® and cognitive function of elderly adults over a 20-year period.The data were gathered from the prospective community-based cohort study 'Paquid'. Within the study sample of 3612 non-demented participants aged 65 and over at baseline, three groups were compared: 589 subjects reporting use of EGb761® at at least one of the ten assessment visits, 149 subjects reporting use of piracetam at one of the assessment visits and 2874 subjects not reporting use of either EGb761® or piracetam. Decline on MMSE, verbal fluency and visual memory over the 20-year follow-up was analysed with a multivariate mixed linear effects model. A significant difference in MMSE decline over the 20-year follow-up was observed in the EGb761® and piracetam treatment groups compared to the 'neither treatment' group. These effects were in opposite directions: the EGb761® group declined less rapidly than the 'neither treatment' group, whereas the piracetam group declined more rapidly (β = -0.6. Regarding verbal fluency and visual memory, no difference was observed between the EGb761® group and the 'neither treatment' group (respectively, β = 0.21 and β = -0.03, whereas the piracetam group declined more rapidly (respectively, β = -1.40 and β = -0.44. When comparing the EGb761® and piracetam groups directly, a different decline was observed for the three tests (respectively β = -1.07, β = -1.61 and β = -0.41.Cognitive decline in a non-demented elderly population was lower in subjects who reported using EGb761® than in those who did not. This effect may be a specific medication

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...

Predictors of hyperglycaemic individuals who do not follow up with physicians after screening in Japan: a cohort study.

Science.gov (United States)

Tsujimura, Yuka; Takahashi, Yoshimitsu; Ishizaki, Tatsuro; Kuriyama, Akira; Miyazaki, Kikuko; Satoh, Toshihiko; Ikeda, Shunya; Kimura, Shinya; Nakayama, Takeo

2014-08-01

Although people screened as being hyperglycaemic often fail to follow up with physicians for clinical assessment, epidemiologic findings on the frequency and predictors of not following up (hereafter, "no follow-up") are lacking. The purpose of this study was to examine the no follow-up rate with physicians after screening for diabetes and predictors of no follow-up. We assessed cases of no follow-up with physicians within six months after screening based on medical claims data from employee-based social health insurance programs in Japan, for people aged 20 to 68 years from 2005 to 2010. Among 3878 screened participants with hyperglycaemia, 2527 (65%) did not follow up with their physicians within six months after screening. Multiple logistic regression analysis revealed that younger age and lower blood glucose level predicted no follow-up among both men and women, while lower body mass index and negative proteinuria also predicted no follow-up among men. Treatment for dyslipidaemia facilitated follow-up among both genders, and treatment for hypertension or depression facilitated follow-up among men. Approximately two thirds of individuals screened as having hyperglycaemia did not follow up with their physicians within six months after screening. Predictors of no follow-up were younger age and milder hyperglycaemia. Being on treatment for co-morbidities tended to facilitate follow-up. Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.

Internet-based data inclusion in a population-based European collaborative follow-up study of inflammatory bowel disease patients: description of methods used and analysis of factors influencing response rates.

Science.gov (United States)

Wolters, Frank L; van Zeijl, Gilbert; Sijbrandij, Jildou; Wessels, Frederik; O'Morain, Colm; Limonard, Charles; Russel, Maurice G; Stockbrugger, Reinhold W

2005-12-07

To describe an Internet-based data acquisition facility for a European 10-year clinical follow-up study project of a population-based cohort of inflammatory bowel disease (IBD) patients and to investigate the influence of demographic and disease related patient characteristics on response rates. Thirteen years ago, the European Collaborative study group of IBD (EC-IBD) initiated a population-based prospective inception cohort of 2 201 uniformly diagnosed IBD patients within 20 well-described geographical areas in 11 European countries and Israel. For the 10-year follow-up of this cohort, an electronic patient questionnaire (ePQ) and electronic physician per patient follow-up form (ePpPFU) were designed as two separate data collecting instruments and made available through an Internet-based website. Independent demographic and clinical determinants of ePQ participation were analyzed using multivariate logistic regression. In 958 (316 CD and 642 UC) out of a total number of 1 505 (64%) available IBD patients, originating from 13 participating centers from nine different countries, both ePQ and ePpPFU were completed. Patients older than 40 years at ePQ completion (OR: 1.53 (95%CI: 1.14-2.05)) and those with active disease during the 3 mo previous to ePQ completion (OR: 3.32 (95%CI: 1.57-7.03)) were significantly more likely to respond. An Internet-based data acquisition tool appeared successful in sustaining a unique Western-European and Israelian multi-center 10-year clinical follow-up study project in patients afflicted with IBD.

Increased Risk of Clinically Significant Gallstones following an Appendectomy: A Five-Year Follow-Up Study.

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Shiu-Dong Chung

Full Text Available Although the vermiform appendix is commonly considered a vestigial organ, adverse health consequences after an appendectomy have garnered increasing attention. In this study, we investigated the risks of gallstone occurrence during a 5-year follow-up period after an appendectomy, using a population-based dataset. We used data from the Taiwan Longitudinal Health Insurance Database 2005. The exposed cohort included 4916 patients who underwent an appendectomy. The unexposed cohort was retrieved by randomly selecting 4916 patients matched with the exposed cohort in terms of sex, age, and year. We individually tracked each patient for a 5-year period to identify those who received a diagnosis of gallstones during the follow-up period. Cox proportional hazard regressions were performed for the analysis. During the 5-year follow-up period, the incidence rate per 1000 person-years was 4.71 for patients who had undergone an appendectomy, compared to a rate of 2.59 for patients in the unexposed cohort (p<0.001. Patients who had undergone an appendectomy were independently associated with a 1.79 (95% CI = 1.29~2.48-fold increased risk of being diagnosed with gallstones during the 5-year follow-up period. We found that among female patients, the adjusted hazard ratio of gallstones was 2.25 (95% CI = 1.41~3.59 for patients who underwent an appendectomy compared to unexposed patients. However, for male patients, we failed to observe an increased hazard for gallstones among patients who underwent an appendectomy compared to unexposed patients. We found an increased risk of a subsequent gallstone diagnosis within 5 years after an appendectomy.

Characteristics Associated With Antihypertensive Treatment and Blood Pressure Control: A Population-Based Follow-Up Study in Peru.

Science.gov (United States)

Zavala-Loayza, J Alfredo; Benziger, Catherine Pastorius; Cárdenas, María Kathia; Carrillo-Larco, Rodrigo M; Bernabé-Ortiz, Antonio; Gilman, Robert H; Checkley, William; Miranda, J Jaime

2016-03-01

Over one-quarter of the world's adult population has hypertension, yet achieving adequate treatment or control targets remains a challenge. This study sought to identify, longitudinally, characteristics associated with antihypertensive treatment and blood pressure (BP) control among individuals with hypertension. Data from individuals enrolled in the population-based CRONICAS Cohort Study (adults ≥35 years, living in 4 different rural/urban and coastal/high-altitude Peruvian settings) with hypertension at baseline were used. Antihypertensive treatment and BP control were assessed at baseline and at 15 months. Multinomial logistic regressions were used to estimate relative risk ratios (RRR) and 95% confidence intervals (95% CI) of factors associated with antihypertensive treatment and BP control at follow-up. At baseline, among 717 individuals with hypertension (53% women, mean age 61.5 ± 12.4 years), 28% were unaware of their hypertension status, 30% were aware but untreated, 16% were treated but uncontrolled, and 26% were treated and controlled. At follow-up, 89% of unaware and 82% of untreated individuals persisted untreated, and only 58% of controlled individuals remained controlled. Positive predictors of receiving treatment and being controlled at follow-up included age (RRR: 0.81; 95% CI: 0.73 to 0.91 for every 5 years) and family history of a chronic disease (RRR: 0.53; 95% CI: 0.31 to 0.92 vs. no history); whereas Puno rural site (RRR: 16.51; 95% CI: 1.90 to 143.56 vs. Lima) and male sex (RRR: 2.59; 95% CI: 1.54 to 4.36) were risk factors. Systolic BP at baseline (RRR: 1.27; 95% CI: 1.16 to 1.39 for every 5 mm Hg) and male sex (RRR: 1.75, 95% CI: 1.02 to 2.98) were risk factors for being treated but uncontrolled at follow-up. Large gaps in treatment of hypertension were observed. Targeting specific populations such as men, younger individuals, or those without family history of disease may increase coverage of antihypertensive treatment. Also, targeting

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

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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.

Validity of Danish Breast Cancer Group (DBCG) registry data used in the predictors of breast cancer recurrence (ProBeCaRe) premenopausal breast cancer cohort study

DEFF Research Database (Denmark)

Cronin-Fenton, Deirdre P; Kjærsgaard, Anders; Ahern, Thomas P

2017-01-01

BACKGROUND: Validation studies of the Danish Breast Cancer Group (DBCG) registry show good agreement with medical records for adjuvant treatment data, but inconsistent recurrence information. No studies have validated changes in menopausal status or endocrine therapy during follow-up. In a longit...

Irradiation of pregnant woman. Necessity of a prolonged follow up. Report of 3 cases

International Nuclear Information System (INIS)

Lagrange, J.L.; Costa, A.; Chauvel, P.; Hery, M.; Lalanne, C.M.; Mariani, R.

1986-01-01

Therapeutic irradiation for cancer in pregnant women is exceptional. We report three cases of children irradiated in such circumstances. During the pregnancy, the fetuses received 50, 40 and 17 cGy. Two children are normal several years later, while one has growth impairment. In vivo dosimetry and dosimetry with a phantom must be performed before such irradiation to determine fetal irradiation and to evaluate the risks. As effects may not show up until a certain time has elapsed, prolonged follow-up is necessary. The rarity of these cases justifies creation of a registry [fr

Current variables, definitions and endpoints of the European Cardiovascular Magnetic Resonance Registry

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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.

Increased risk of ischemic stroke in young patients with ankylosing spondylitis: a population-based longitudinal follow-up study.

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Chia-Wei Lin

Full Text Available BACKGROUND: Prospective data on the association between ischemic stroke and ankylosing spondylitis (AS in the young are sparse. The purpose of this population-based, age- and sex-matched longitudinal follow-up study was to investigate the risk of developing ischemic stroke in young patients with AS. METHODS: A total of 4562 patients aged 18- to 45-year-old with at least two ambulatory visits in 2001 with a principal diagnosis of AS were enrolled in the AS group. The non-AS group consisted of 22810 age- and sex-matched, randomly sampled subjects without AS. The two-year ischemic stroke-free survival rate for each group were calculated using the Kaplan-Meier method. Cox proportional hazards regression analysis was used to estimate the hazard ratio of ischemic stroke after adjusting for demographic and clinical covariates. RESULTS: During follow-up, 21 patients in the AS group and 53 in the non-AS group developed ischemic stroke. The ischemic stroke-free survival rate over the 2 year follow-up was lower in the AS group than the non-AS group (p = 0.0021. The crude hazard ratio of ischemic stroke for the AS group was 1.98 (95% CI, 1.20-3.29; p = 0.0079 and the adjusted hazard ratio after controlling for demographic and comorbid medical disorders was 1.93 (95% CI, 1.16-3.20; p = 0.0110. CONCLUSION: Our study showed an increased risk of developing ischemic stroke in young patients with AS.

Pre-vaccination care-seeking in females reporting severe adverse reactions to HPV vaccine. A registry based case-control study

DEFF Research Database (Denmark)

Mølbak, Kåre; Hansen, Niels Dalum; Valentiner-Branth, Palle

2016-01-01

to the DMA of suspected severe adverse reactions.We selected controls without reports of adverse reactions from the Danish vaccination registry and matched by year of vaccination, age of vaccination, and municipality, and obtained from the Danish National Patient Registry and The National Health Insurance...... vaccination programme has declined. The aim of the present study was to determine health care-seeking prior to the first HPV vaccination among females who suspected adverse reactions to HPV vaccine. Methods In this registry-based case-control study, we included as cases vaccinated females with reports...... Service Register the history of health care usage two years prior to the first vaccine. We analysed the data by logistic regression while adjusting for the matching variables. Results The study included 316 cases who received first HPV vaccine between 2006 and 2014. Age range of cases was 11 to 52 years...

Thyroid and other neoplasms following childhood scalp irradiation

International Nuclear Information System (INIS)

Ron, E.; Modan, B.

1984-01-01

In 1968, a comprehensive investigation of the long-term health effects of childhood scalp irradiation treatment for tinea capitis (ringworm of the scalp) was undertaken in Israel. Topics studied included cancer incidence, mortality, mental disorders, scholastic aptitude and achievement, and measures of central nervous system (CNS) function. A second follow-up of cancer incidence and incidence of benign tumors of selected sites is now in progress, using the Israel Cancer Registry, hospital pathology records, and discharge summaries as the main data sources. Because data from the first follow-up demonstrated a significantly elevated risk of cancer of the thyroid and brain but only a slight nonsignificant excess of leukemia, these three sites were chosen for early analysis. This paper presents preliminary data for these selected sites, based on the information available from the Cancer Registry between 1950 and 1978

Radiological follow-up of uncemented knee prostheses. Preliminary study

International Nuclear Information System (INIS)

Martin Hervas, C.; Gomez Barrena, E.; Marquez Moreno, I.; Calle Yuste, F.; Ordonez Parra, J.M.

1993-01-01

The preliminary results of a prospective study of 40 uncemented total knee prostheses (TKP) are presented following a radiological protocol with fluoroscopic control and follow-up of over 2 years. The prosthesis-bone interface and the components alignment were assessed. Several radiological signs were studied to assess this interface with respect to the fixing of the component, but they showed little clinical correlation. Statistical significance (p<0.05, chisquare) was found only in the observation of sclerosis in areas of support for the tibital tray as a reaction of the bone. This radiological follow-up is of interest to determine the evolution of the interface and position of the implant to prevent complications (especially loosening) in patients, particularly those under 60 years old, who represent the group that can most benefit from prosthetic systems with uncemented anchorage because of their life expectation and level of activity. Author

Treatment of selective mutism: a 5-year follow-up study.

Science.gov (United States)

Oerbeck, Beate; Overgaard, Kristin Romvig; Stein, Murray B; Pripp, Are Hugo; Kristensen, Hanne

2018-01-22

Selective mutism (SM) has been defined as an anxiety disorder in the diagnostic and statistical manual of mental disorders (DSM-5). Cognitive behavioral therapy (CBT) is the recommended approach for SM, but prospective long-term outcome studies are lacking. Reports from the children themselves, and the use of more global quality of life measures, are also missing in the literature. We have developed a school-based CBT intervention previously found to increase speech in a pilot efficacy study and a randomized controlled treatment study. Continued progress was found in our 1-year follow-up studies, where older age and more severe SM had a significant negative effect upon outcome. In the present study, we provide 5-year outcome data for 30 of these 32 children with SM who completed the same CBT for mean 21 weeks (sd 5, range 8-24) at mean age 6 years (10 boys). Mean age at the 5-year follow-up was 11 years (range 8-14). Outcome measures were diagnostic status, the teacher- and parent-rated selective mutism questionnaires, and child rated quality of life and speaking behavior. At the 5-year follow-up, 21 children were in full remission, five were in partial remission and four fulfilled diagnostic criteria for SM. Seven children (23%) fulfilled criteria for social phobia, and separation anxiety disorder, specific phobia and/or enuresis nocturna were found in a total of five children (17%). Older age and severity at baseline and familial SM were significant negative predictors of outcome. Treatment gains were maintained on the teacher- and parent questionnaires. The children rated their overall quality of life as good. Although most of them talked outside of home, 50% still experienced it as somewhat challenging. These results point to the long-term effectiveness of CBT for SM, but also highlight the need to develop more effective interventions for the subset of children with persistent symptoms.Clinical trials registration NCT01002196.

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.

[A follow-up study of the elderly in agricultural and piscatorial areas of Hokkaido].

Science.gov (United States)

Mori, M; Goto, R; Masuoka, H; Yoshida, K; Miyake, H

1990-02-01

A base-line survey was performed for 3,185 persons over 40 years of age in 1984 and 1985 in agricultural and piscatorial areas of Hokkaido with regards to their dietary habits and life style. Of them, 147 persons died prior to the recent follow-up survey of 1988. As a result of a case-control study of the dead with those of the followed-up group, a more frequent intake of instant noodles was indicated as significantly increasing the risk of death, even after adjusting for the health status at the base-line survey and other confounding variables (the adjusted relative risk = 1.44 per a frequency class, p = 0.049).

Long term sickness absence and diabetes: a Danish register-based longitudinal study with up to 17 years of followup

DEFF Research Database (Denmark)

Nexø, Mette Andersen; Carlsen, Kathrine; Pedersen, Jacob

Background and aims: The number of individuals with diabetes mellitus within the working age range is expected to rise. Type 1 and type 2 diabetes mellitus (diabetes) can have work related consequences such as decreased productivity, increased risks of sickness absence and early retirement...... year of diagnosis and in subsequent years. Materials and methods: The study was based on registers with up to 17 years of follow-up. In a working population (n=102.746) individuals with the diagnoses of type 1 or type 2 diabetes (n=3.325: women, n=1.987, men=1338) and individuals without diabetes (n=99.......421: women, n=73.332, men=26.089) were identified by Danish national registries of diagnosis (ICD-10 codes: E10.0-10.9, E11.0-E11.9, E12-E14) and prescribed medicine (ATC codes: A10A, A10B, A10BA02), in the period 1994 to 2011. We estimated the hazard ratios of transitions from work to LTSA (>3 consecutive...

CONTRACT FOLLOW UP TRAINING

CERN Multimedia

Technical Training; Tel. 74460

2001-01-01

SPL is organizing Training Sessions on the Contract Follow Up application. CFU is a Web based tool, developped and supported by the Administrative Information Services. It allows the creation of Divisional Requests and the follow up of their processing, from the Market Survey to the Invitation to Tender or Price Enquiry, approval by the Finance Committee, up to the actual signature of a Contract, acccording to the CERN Purchasing procedures. It includes a document management component. It also provides link with other AIS applications such as BHT and EDH. The course is primarily intended for DPOs, Contract Technical responsibles in the division and their assistants, but is beneficial to anybody involved in the follow up of such Purchasing Procedures. This course is free of charge, but application is necessary. The details of the course may be found at http://training.web.cern.ch/Training/ENSTEC/P2001/Bureautique/cfu4_f.htm General information of CFU may be found at http://ais.cern.ch/apps/cfu/ The dates of t...

Establishing the characteristics for patients with chronic Complex Regional Pain Syndrome: the value of the CRPS-UK Registry.

Science.gov (United States)

Shenker, Nicholas; Goebel, Andreas; Rockett, Mark; Batchelor, James; Jones, Gareth T; Parker, Richard; de C Williams, Amanda C; McCabe, Candida

2015-05-01

The long-term prognosis of patients with Complex Regional Pain Syndrome (CRPS) is unknown with no reported prospective studies from the United Kingdom longer than 18 months. The CRPS-UK Network aims to study this by use of a Registry. The aims of this article are, to outline the CRPS-UK Registry, assess the validity of the data and to describe the characteristics of a sample of the UK CRPS population. A web-based CRPS-UK Registry was developed and made accessible to centres experienced in diagnosing and managing patients with CRPS. Pragmatic annual follow-up questions were agreed. Up until July 2013, the Registry has recruited 240 patients. A blinded, validation study of 20 consecutive patients from two centres (10 each) demonstrated 95.6% completion and 99.4% accuracy of a random sample of the recorded data. These patients had chronic disease (median duration: 29 months); 72.5% were female (2.6:1), with a mean age at symptoms onset of 43 years, and were left-handed more than expected (21.8% versus 10% in the general population). Patients reported a delayed diagnosis, with the median time between symptom onset and diagnosis of 6 months. In all, 30 patients (12.5%) had multiple limb involvement and (83.3%) had a contiguous spread of CRPS. CRPS-UK Registry is a validated method for actively recruiting well-characterised patients with CRPS to provide further information on the long-term outcome.

Effects of Medical Interventions on Gender Dysphoria and Body Image: A Follow-Up Study.

Science.gov (United States)

van de Grift, Tim C; Elaut, Els; Cerwenka, Susanne C; Cohen-Kettenis, Peggy T; De Cuypere, Griet; Richter-Appelt, Hertha; Kreukels, Baudewijntje P C

2017-09-01

The aim of this study from the European Network for the Investigation of Gender Incongruence is to investigate the status of all individuals who had applied for gender confirming interventions from 2007 to 2009, irrespective of whether they received treatment. The current article describes the study protocol, the effect of medical treatment on gender dysphoria and body image, and the predictive value of (pre)treatment factors on posttreatment outcomes. Data were collected on medical interventions, transition status, gender dysphoria (Utrecht Gender Dysphoria Scale), and body image (Body Image Scale for transsexuals). In total, 201 people participated in the study (37% of the original cohort). At follow-up, 29 participants (14%) did not receive medical interventions, 36 hormones only (18%), and 136 hormones and surgery (68%). Most transwomen had undergone genital surgery, and most transmen chest surgery. Overall, the levels of gender dysphoria and body dissatisfaction were significantly lower at follow-up compared with clinical entry. Satisfaction with therapy responsive and unresponsive body characteristics both improved. High dissatisfaction at admission and lower psychological functioning at follow-up were associated with persistent body dissatisfaction. Hormone-based interventions and surgery were followed by improvements in body satisfaction. The level of psychological symptoms and the degree of body satisfaction at baseline were significantly associated with body satisfaction at follow-up.

Two-year follow-up study of a group-based diabetes medical nutrition therapy and motivational interviewing intervention among African American women

Directory of Open Access Journals (Sweden)

Miller ST

2017-04-01

Full Text Available Stephania T Miller,1 Sylvie A Akohoue2 1Department of Surgery, 2Department of Family and Community Medicine, Meharry Medical College, Nashville, TN, USA Objectives: To assess the 2-year efficacy of a combined medical nutrition therapy and motivational interviewing (MI pilot study intervention and factors that influenced long-term dietary self-care.Research design and methods: Pilot study participants, African American women with type 2 diabetes, completed a 2-year follow-up study visit, including clinical assessments and completion of a dietary self-care questionnaire and a semi-structured interview. Wilcoxon signed-rank tests were used to evaluate differences between baseline and 2-year follow-up clinical and dietary self-care outcomes. Hierarchical coding was used to analyze semi-structured interviews and categorize facilitator and barrier themes into subthemes. Subthemes were quantified based on the number of subtheme-related comments. Results: Among the 12 participants (mean age 57.1±5.7 years, improvements were observed for HbA1c (baseline: 10.25%; interquartile range [IQR]: 8.10, 11.72 and follow-up: 8.8%; IQR: 7.48,10.22, systolic blood pressure (baseline: 142 mm Hg; IQR: 134.25, 157.25 and follow-up: 127 mm Hg; IQR: 113.5, 143.25, frequency of eating high-fat foods (baseline: 3.5 days; IQR: 2.75, 4.25 and follow-up: 3 days; IQR: 2.5, 4.5, and of spacing carbohydrates throughout the day (baseline: 3 days; IQR: 3.0, 4.0 and follow-up: 4 days; IQR: 1.5, 4.5. There was a statistically significant decrease (p=0.04 in the frequency of fruit and vegetable intake (baseline: 4 days; IQR: 3.75, 7.0 and follow-up: 3.5 days; IQR: 2.75, 4.0. Dietary self-care barriers and facilitators included internal (eg, motivation and external factors (eg, social support. Motivation (70 comments and lack of motivation (67 comments were the most pervasive facilitator and barrier subthemes, respectively. Conclusion: Overall, diabetes-related clinical and dietary

The value of routine follow-up after treatment for head and neck cancer. A national DAHANCA study

DEFF Research Database (Denmark)

Pagh, Anja; Vedtofte, Thomas; Lynggaard, Charlotte Duch

BACKGROUND: The post-treatment follow-up is well-integrated in the oncologic care tradition, based on the risk of developing recurrent disease or new primary tumors in treated patients. Furthermore, follow-up serves as an opportunity to monitor treatment effects and to provide clinical care of side...... effects. In this study we measured the activity and effectiveness of routine follow-up in head and neck cancer and assessed the value of follow-up from the perspectives of both physicians and the patients. PATIENTS AND METHODS: During a period of six weeks a prospective national cross section cohort...

Ginkgo Biloba Extract and Long-Term Cognitive Decline: A 20-Year Follow-Up Population-Based Study

Science.gov (United States)

Amieva, Hélène; Meillon, Céline; Helmer, Catherine; Barberger-Gateau, Pascale; Dartigues, Jean François

2013-01-01

Background Numerous studies have looked at the potential benefits of various nootropic drugs such as Ginkgo biloba extract (EGb761®; Tanakan®) and piracetam (Nootropyl®) on age-related cognitive decline often leading to inconclusive results due to small sample sizes or insufficient follow-up duration. The present study assesses the association between intake of EGb761® and cognitive function of elderly adults over a 20-year period. Methods and Findings The data were gathered from the prospective community-based cohort study ‘Paquid’. Within the study sample of 3612 non-demented participants aged 65 and over at baseline, three groups were compared: 589 subjects reporting use of EGb761® at at least one of the ten assessment visits, 149 subjects reporting use of piracetam at one of the assessment visits and 2874 subjects not reporting use of either EGb761® or piracetam. Decline on MMSE, verbal fluency and visual memory over the 20-year follow-up was analysed with a multivariate mixed linear effects model. A significant difference in MMSE decline over the 20-year follow-up was observed in the EGb761® and piracetam treatment groups compared to the ‘neither treatment’ group. These effects were in opposite directions: the EGb761® group declined less rapidly than the ‘neither treatment’ group, whereas the piracetam group declined more rapidly (β = −0.6). Regarding verbal fluency and visual memory, no difference was observed between the EGb761® group and the ‘neither treatment’ group (respectively, β = 0.21 and β = −0.03), whereas the piracetam group declined more rapidly (respectively, β = −1.40 and β = −0.44). When comparing the EGb761® and piracetam groups directly, a different decline was observed for the three tests (respectively β = −1.07, β = −1.61 and β = −0.41). Conclusion Cognitive decline in a non-demented elderly population was lower in subjects who reported using EGb761® than in

Occupational risk factors for testicular cancer: a registry-based case-control study in Rhineland Palatinate – Germany

Science.gov (United States)

Yousif, Lamyaa; Hammer, Gaël P.; Emrich, Katharina; Blettner, Maria; Zeeb, Hajo

2013-01-01

Objectives: Testicular cancer affects mainly men below the age of 50. An association with occupation and social status has been suggested but risk factors are not well understood. A registry-based case-control study focusing on occupation was performed in Germany. Methods: All 348 testicular cancer cases with available gainful occupational information registered between 2000 and 2005; as well as 564 suitable controls (from a pool of other cancers) were drawn from the Cancer Registry of Rhineland-Palatinate. Unconditional logistic regression was used to compute odds ratios (OR) and associated 95% confidence intervals (CI). Results: Slightly elevated OR were observed for technicians and related professionals (OR 1.62, 95% CI 1.00–2.63) and for clerical support workers (OR 1.71, 95% CI 1.14–2.56). This increase was highest in the age group 20–50 for technicians (OR 2.02, 95% CI 1.23–3.33) and clerks (OR 2.00, 95% CI 1.30–3.09), respectively. An association with testicular cancer was observed for no other occupation. Conclusion: An increased risk of testicular cancer was observed for technicians and related professionals and clerical support workers. This could be related to socioeconomic status or sedentary life style, two factors that were identified in previous studies. While the feasibility of a purely registry-based study was shown, missing occupational data and the choice of cancer controls represent challenges to the validity of this approach. PMID:24265602

Vegetarian diet and all-cause mortality: Evidence from a large population-based Australian cohort - the 45 and Up Study.

Science.gov (United States)

Mihrshahi, Seema; Ding, Ding; Gale, Joanne; Allman-Farinelli, Margaret; Banks, Emily; Bauman, Adrian E

2017-04-01

The vegetarian diet is thought to have health benefits including reductions in type 2 diabetes, hypertension, and obesity. Evidence to date suggests that vegetarians tend to have lower mortality rates when compared with non-vegetarians, but most studies are not population-based and other healthy lifestyle factors may have confounded apparent protective effects. The aim of this study was to evaluate the association between categories of vegetarian diet (including complete, semi and pesco-vegetarian) and all-cause mortality in a large population-based Australian cohort. The 45 and Up Study is a cohort study of 267,180 men and women aged ≥45years in New South Wales (NSW), Australia. Vegetarian diet status was assessed by baseline questionnaire and participants were categorized into complete vegetarians, semi-vegetarians (eat meat≤once/week), pesco-vegetarians and regular meat eaters. All-cause mortality was determined by linked registry data to mid-2014. Cox proportional hazards models quantified the association between vegetarian diet and all-cause mortality adjusting for a range of potential confounding factors. Among 243,096 participants (mean age: 62.3years, 46.7% men) there were 16,836 deaths over a mean 6.1years of follow-up. Following extensive adjustment for potential confounding factors there was no significant difference in all-cause mortality for vegetarians versus non-vegetarians [HR=1.16 (95% CI 0.93-1.45)]. There was also no significant difference in mortality risk between pesco-vegetarians [HR=0.79 (95% CI 0.59-1.06)] or semi-vegetarians [HR=1.12 (95% CI 0.96-1.31)] versus regular meat eaters. We found no evidence that following a vegetarian diet, semi-vegetarian diet or a pesco-vegetarian diet has an independent protective effect on all-cause mortality. Copyright © 2016 Elsevier Inc. All rights reserved.

The follow-up time issue on small roundabouts

Directory of Open Access Journals (Sweden)

Janusz WOCH

2008-01-01

Full Text Available The follow-up time was investigated. The aim of this analysis was to create a formula that allows the follow-up time calculated using the most important external parameters. The studies were based on empirical data collected at small roundabouts localized on Upper Silesia. The follow-up time is the average time gap between two cars of the minor stream being queued and entered the same major stream gap one behind the other. Follow-up times were measured directly by observing traffic flow. Resulting follow-up times were analyzed to determine their dependence on parameters such as intersection layout, roundabouts diameter and left visibility. These parameters were tested using the conventional calculation method (regression analysis. The dependence of follow-up time was then integrated into the own capacity estimation method for small roundabouts localized on urban areas. One of the biggest advantages this dependence is that capacity and traffic flow on small roundabouts can be determined reliably and appropriately for actual situations. The new follow-up time values for all range of external diameters of small roundabout 26 (22 – 40 m have been presented in this article.

Dietary Acid-Base Balance in Adolescent Sprint Athletes: A Follow-up Study

Directory of Open Access Journals (Sweden)

Peter Clarys

2011-02-01

Full Text Available Sprinters are advised to include additional protein sources in their diet. Basal metabolism and vigorous physical activities generate hydrogen ions that need to be buffered. The present follow-up study estimates the dietary potential renal acid load (PRAL and net endogenous acid production (NEAP in adolescent sprint athletes. Seven-day food diaries and anthropometrics of 60 adolescent sprint athletes (mean age at start 14.7 ± 1.9 years were collected every six months over a three year period. Comparisons were made between athletes with a negative (PRAL(− versus positive PRAL (PRAL(+. For the entire sample, mean PRAL values of up to 6 mEq/day were slightly positive despite a relatively high protein intake of around 1.5 g/kg. The NEAP ranging between 42 and 46 mEq/day remained stable during the study period. Athletes with a PRAL(− (−8 to −10 mEq/day consumed significantly more fruit and fruit juice than athletes with a PRAL(+ (+9 to 14 mEq/day. Athletes with a PRAL(+ did not consume more meat, fish and poultry than athletes with a PRAL(−. Grains and dairy products were only discriminative between the two groups on one measurement occasion. Lowering the PRAL can be obtained by increasing the consumption of potatoes, fruits, vegetables and vegetable soup.

Cancer incidence in North West Algeria (Mascara) 2000-2010: results from a population-based cancer registry

Science.gov (United States)

Benarba, Bachir; Meddah, Boumedienne; Hamdani, Houria

2014-01-01

Cancer is a leading cause of death worldwide accounting for 7.4 million deaths. Cancer has become a major public health concern in Algeria. The aim of the present study was to estimate cancer incidence in Mascara Province based on the population-based cancer registry. We analyzed data from the cancer registry of Mascara covering all cancer cases diagnosed by all methods and included in the registry from 1st January 2000 to 31st December 2010. The results are presented as incidence rates of cases by site, sex, age, and crude rate. Age-standardized rates per 100,000 person-years (ASRs) were calculated, using the direct method of standardization to the world population. A total of 1875 cases of invasive cancer were recorded. The mean age of diagnosis for all cancers was 52.66 ± 0.5 in men and 59.18 ± 0.6 in women. The ASR for all cancers in females was 27.8 per 100,000, and that for males was 23.6 per 100,000. The most important finding of the present study was the high incidence of liver cancer among males and females in Mascara. Among females, breast cancer was the most frequently reported followed by Cervix uteri, liver and colon. The most frequent cancer types in males were lung, colon, esophagus and stomach and liver. Cancer incidence in Mascara province was lower than that reported in other national and regional registries. Findings of the present study revealed high incidence of liver cancer in the province, the highest in Algeria, suggesting high prevalence of risk factors. PMID:26417294

Sexual dysfunction in multiple sclerosis: A 6-year follow-up study.

Science.gov (United States)

Kisic-Tepavcevic, Darija; Pekmezovic, Tatjana; Trajkovic, Goran; Stojsavljevic, Nebojsa; Dujmovic, Irena; Mesaros, Sarlota; Drulovic, Jelena

2015-11-15

Sexual dysfunction (SD) is a common but often overlooked and undertreated symptom in multiple sclerosis (MS). The purpose of our longitudinal study was to explore the changes in the level of sexual functioning in MS cohort after a period of 3 and 6 years of follow-up, as well as to investigate the predictors of changes in SD during the period of observation. The study population comprise a cohort of 93 patients with MS (McDonald's criteria, 2001) who were assessed at three time points during the study (baseline, and at the 3- and 6-year follow-up). The presence and severity of SD was quantified by Szasz sexual functioning scale. Independent predictors of the ordinal-scaled measure of sexual problems were identified using a generalized linear mixed regression models. The number of reported SD symptoms increased markedly for both genders during the whole period of observation. Duration of follow-up, age, level of physical disability, depression and fatigue were identified as independent prognostic factors for deterioration of sexual functioning in patients with MS during the 6-year follow-up. Our study provides insight into dynamics of change in sexual function among patients with MS and predictors of change, over the period of 6 years. Copyright © 2015 Elsevier B.V. All rights reserved.

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...

12-month follow-up study of drug treatment in pathological gamblers: a primary outcome study.

Science.gov (United States)

Dannon, Pinhas N; Lowengrub, Katherine; Musin, Ernest; Gonopolsky, Yehudit; Kotler, Moshe

2007-12-01

Pathological gambling (PG) is a relatively common and highly disabling impulse control disorder. A range of psychotherapeutic agents including selective serotonin reuptake inhibitors, antiepileptic drugs, and opioid antagonists are shown to be effective in the short-term treatment of PG. The use of a wide range of pharmacological treatments for PG is consistent with the observation that PG shares features of obsessive-compulsive spectrum disorders, impulse control disorders, and addictive disorders. The aim of the study is to assess the rate of relapse in treatment-responder pathological gamblers after discontinuation of the active treatment. Our study sample was composed of 43 male pathological gamblers who had been full responders to 1 of 4 drug treatment regimens (fluvoxamine, topiramate, bupropion SR, or naltrexone) from several previous acute open-label (12-week) comparison studies. Full response was defined as the absence of gambling for a 1-month duration together with improvement on the Clinical Global Improvement scale. The 43 full responders were then followed prospectively for an additional 9 months, which included a 3-month open-label continuation phase and a 6-month medication-free follow-up phase. Follow-up visits were performed on a monthly basis throughout the duration of study. At every follow-up visit, a comprehensive psychiatric diagnostic evaluation was performed on all patients, and patients were assessed for symptoms of gambling using a self-report instrument and collateral family reports. The Clinical Global Impression Improvement scale was also administered at every follow-up visit. Raters were blind to the previous drug treatment. Most patients did not relapse during the 6-month medication-free follow-up phase. Three of 6 patients with fluvoxamine, 3 of 9 with topiramate, 7 of 18 with bupropion SR, and 4 of 10 with naltrexone relapsed. Relapse was strictly defined as gambling behavior at any time during the 6-month medication-free follow-up

Registro Absorb Italiano (BVS-RAI): an investigators-owned and -directed, open, prospective registry of consecutive patients treated with the Absorb™ BVS: study design

Energy Technology Data Exchange (ETDEWEB)

Cortese, Bernardo, E-mail: bcortese@gmail.com [Azienda Ospedaliera Fatebenefratelli e Oftalmico, Milano (Italy); Ielasi, Alfonso [Azienda Ospedaliera Bolognini, Seriate (Italy); Varricchio, Attilio [Ospedale Monaldi, Napoli (Italy); Tarantini, Giuseppe [Azienda Ospedaliera Universitaria, Padova (Italy); LaVecchia, Luigi [Azienda Ospedaliera San Bortolo, Vicenza (Italy); Pisano, Francesco [Ospedale Regionale, Aosta (Italy); Facchin, Michela [Ospedale di Este (Italy); Gistri, Roberto [Ospedale S. Andrea, La Spezia (Italy); D’Urbano, Maurizio [Ospedale di Magenta (Italy); Lucci, Valerio [Ospedale di Avezzano (Italy); Loi, Bruno [Azienda Ospedaliera Brotzu, Cagliari (Italy); Tumminello, Gabriele [Ospedale Cardinal Massaia, Asti (Italy); Colombo, Alessandro [Ospedale Sacco, Milano (Italy); Limbruno, Ugo [Ospedale della Misericordia, Grosseto (Italy); Nicolino, Annamaria [Ospedale Santa Corona, Pietra Ligure (Italy); Calzolari, Diego [Azienda Ospedaliera Ca Foncello, Treviso (Italy); Tognoni, Gianni [Centro di Ricerche Farmacologiche e Biomediche ' Mario Negri' , Milano (Italy); Defilippi, Gianfranco [Ospedale Cardinal Massaia, Asti (Italy); Buccheri, Dario [Azienda Ospedaliera Fatebenefratelli e Oftalmico, Milano (Italy); Tespili, Maurizio [Azienda Ospedaliera Bolognini, Seriate (Italy); and others

2015-09-15

Background: The Absorb™ BVS is a bioresorbable, everolimus-eluting scaffold approved and marketed for coronary use. Published data on long-term results after treatment are limited to a small number of patients, most of them with elective PCI of simple lesions. The importance of scaffold resorption is variably appreciated among cardiologists, and indications for use from health technology assessment bodies or guidelines are missing. Instruments are needed to collect, share and assess the experience being accumulated with this new device in several centres. Methods/Design: The BVS-RAI Registry is a spontaneous initiative of a group of Italian interventional cardiologists in cooperation with Centro di Ricerche Farmacologiche e Biomediche 'Mario Negri' Institute, and is not recipient of funding or benefits originating from the BVS manufacturer. It is a prospective registry with 5-year follow-up of all consecutive patients who have undergone successful implantation of 1 or more coronary BVS following the indications, techniques and protocols used in each of the participating institutions. Outcome measures are BVS target lesion failure within one year and device-oriented major adverse cardiac events within 5 years. The registry started in October 2012 and will extend enrolment throughout 2015, with the aim to include about 1000 patients. ClinicalTrials.gov identifier is CT02298413. Conclusions: The BVS-RAI Registry will contribute observational knowledge on the long-term safety and efficacy of the Absorb™ BVS as used in a number of Italian interventional centres in a broad spectrum of settings. Unrewarded and undirected consecutive patient enrolments are key-features of this observation, which is therefore likely to reflect common clinical practice in those centres. - Highlights: • prospective data collection of successful Absorb implantation; • expert Italian centers; • no restrictions for enrollment/no exclusion criteria; • clinical follow up; �

Timing of oral anticoagulant therapy in acute ischemic stroke with atrial fibrillation: study protocol for a registry-based randomised controlled trial.

Science.gov (United States)

Åsberg, Signild; Hijazi, Ziad; Norrving, Bo; Terént, Andreas; Öhagen, Patrik; Oldgren, Jonas

2017-12-02

Oral anticoagulation therapy is recommended for the prevention of recurrent ischemic stroke in patients with atrial fibrillation (AF). Current guidelines do not provide evidence-based recommendations on optimal time-point to start anticoagulation therapy after an acute ischemic stroke. Non-vitamin K antagonist oral anticoagulants (NOACs) may offer advantages compared to warfarin because of faster and more predictable onset of action and potentially a lower risk of intracerebral haemorrhage also in the acute phase after an ischemic stroke. The TIMING study aims to establish the efficacy and safety of early vs delayed initiation of NOACs in patients with acute ischemic stroke and AF. The TIMING study is a national, investigator-led, registry-based, multicentre, open-label, randomised controlled study. The Swedish Stroke Register is used for enrolment, randomisation and follow-up of 3000 patients, who are randomised (1:1) within 72 h from ischemic stroke onset to either early (≤ 4 days) or delayed (≥ 5-10 days) start of NOAC therapy. The primary outcome is the composite of recurrent ischemic stroke, symptomatic intracerebral haemorrhage, or all-cause mortality within 90 days after randomisation. Secondary outcomes include: individual components of the primary outcome at 90 and 365 days; major haemorrhagic events; functional outcome by the modified Rankin Scale at 90 days; and health economics. In an optional biomarker sub-study, blood samples will be collected after randomisation from approximately half of the patients for central analysis of cardiovascular biomarkers after study completion. The study is funded by the Swedish Medical Research Council. Enrolment of patients started in April 2017. The TIMING study addresses the ongoing clinical dilemma of when to start NOAC after an acute ischemic stroke in patients with AF. By the inclusion of a randomisation module within the Swedish Stroke Register, the advantages of a prospective randomised study design

0222 Night work and breast cancer risk among women in the public Danish health care sector - a short-term follow up of a large scale population

DEFF Research Database (Denmark)

Tilma Vistisen, Helene; Helene Garde, Anne; Marie Hansen, Aase

2014-01-01

prevalence of night shift work and with detailed data regarding occupational title and date and hour for beginning and end of every work duty: The Danish Working Hour Database (DWHD). DWHD encompasses payroll data as of 2007 and is updated on an annual basis. For this analysis we defined night work...... national health registries. RESULTS: The 6-year follow up from 2007 to 2012 included 169.011 women of which 98.297 (58%) had ever worked nights during the follow up. A total of1.281 breast cancer cases occurred within the study population. 846 cases occurred among women never worked nights and 435 cases...... among women ever worked nights. CONCLUSIONS: Internal risk assessment of this dataset that includes alternative exposure metrics based on day-to-day night work exposure information will be presented....

Screening and Follow-Up Monitoring for Substance Use in Primary Care: An Exploration of Rural-Urban Variations.

Science.gov (United States)

Chan, Ya-Fen; Lu, Shou-En; Howe, Bill; Tieben, Hendrik; Hoeft, Theresa; Unützer, Jürgen

2016-02-01

Rates of substance use in rural areas are close to those of urban areas. While recent efforts have emphasized integrated care as a promising model for addressing workforce shortages in providing behavioral health services to those living in medically underserved regions, little is known on how substance use problems are addressed in rural primary care settings. To examine rural-urban variations in screening and monitoring primary care- based patients for substance use problems in a state-wide mental health integration program. This was an observational study using patient registry. The study included adult enrollees (n = 15,843) with a mental disorder from 133 participating community health clinics. We measured whether a standardized substance use instrument was used to screen patients at treatment entry and to monitor symptoms at follow-up visits. While on average 73.6 % of patients were screened for substance use, follow-up on substance use problems after initial screening was low (41.4 %); clinics in small/isolated rural settings appeared to be the lowest (13.6 %). Patients who were treated for a mental disorder or substance abuse in the past and who showed greater psychiatric complexities were more likely to receive a screening, whereas patients of small, isolated rural clinics and those traveling longer distances to the care facility were least likely to receive follow-up monitoring for their substance use problems. Despite the prevalent substance misuse among patients with mental disorders, opportunities to screen this high-risk population for substance use and provide a timely follow-up for those identified as at risk remained overlooked in both rural and urban areas. Rural residents continue to bear a disproportionate burden of substance use problems, with rural-urban disparities found to be most salient in providing the continuum of services for patients with substance use problems in primary care.

Periodontitis and cancer mortality: Register-based cohort study of 68,273 adults in 10-year follow-up.

Science.gov (United States)

Heikkilä, Pia; But, Anna; Sorsa, Timo; Haukka, Jari

2018-06-01

Periodontitis, a multifactorial infection-induced low-grade chronic inflammation, can influence the process of carcinogenesis. We studied with 10 years follow-up of 68,273 adults-based cohort the involvement of periodontitis as a risk factor for cancer mortality. Periodontal status was defined based on procedure codes of periodontal treatment. Rate ratios and absolute differences of overall and cancer mortality rates were assessed with respect to periodontal status using multiplicative and additive Poisson regression models, respectively. We adjusted for effect of age, sex, calendar time, socio-economic status, oral health, dental treatments and diabetes. Data about smoking or alcohol consumption were not available. Altogether 797 cancer deaths occurred during 664,020 person-years accumulated over a mean 10.1-year follow-up. Crude cancer mortality rate per 10,000 person-years for participants without and with periodontitis was 11.36 (95% CI 10.47-12.31) and 14.45 (95% CI 12.51-16.61), respectively. Crude rate ratios for periodontitis indicated an increased risk of overall (RR 1.27, 95% CI 1.08-1.39) and pancreatic cancer (RR 1.69, 95% CI 1.04-2.76) mortality. After adjustment, the results showed even stronger associations of periodontitis with increased overall (RR 1.33, 95% CI 1.10-1.58) and pancreatic cancer (RR 2.32, 95% CI 1.31-3.98) mortality. A higher pancreatic cancer mortality among individuals with periodontitis contributed considerably to the difference in overall cancer mortality, but this difference was not due to pancreatic cancer deaths alone. © 2018 UICC.

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

Barriers to follow-up for pediatric cataract surgery in Maharashtra, India: How regular follow-up is important for good outcome. The Miraj Pediatric Cataract Study II

Directory of Open Access Journals (Sweden)

Parikshit Gogate

2014-01-01

Full Text Available Background: Regular follow up and amblyopia treatment are essential for good outcomes after pediatric cataract surgery. Aim: To study the regularity of follow-up after cataract surgery in children and to gauge the causes of poor compliance to follow up. Subjects: 262 children (393 cataracts who underwent cataract surgery in 2004-8. Materials and Methods: The children were identified and examined in their homes and a "barriers to follow-up" questionnaire completed. Demographic data collected, visual acuity estimated, and ocular examination performed. Statistical Analysis: SPSS version 19. Results: Of the 262 children, only 53 (20.6% had been regularly following up with any hospital, 209 (79.4% had not. A total of 150 (57.3% were boys and the average age was 13.23 years (Std Dev 5 yrs. Poor follow up was associated with the older age group ( P 1 line with regular follow-up. Conclusion: Regular follow-up is important and improves vision; eye care practitioners need to take special efforts to ensure better follow-up.

[Pilot testing of an internet based pregnancy planning study "Snart-gravid.dk"].

Science.gov (United States)

Mikkelsen, Ellen M; Maindal, Helle Terkildsen

2011-01-01

Before launching a new study pilot testing is often recommended, however, it is seldom described in depth. Here, we report extensively on a pilot study using the internet as a new method for recruitment and data collection in a prospective cohort study of women planning a pregnancy.We aimed to enroll 2500 participants in six months and attained more than 75 % after 12 months follow up. To test data completeness and validity we randomized participants to fill either a long or a short version of the baseline questionnaire and compared self reported data with registry based data.We succeeded in enrolling 2288 participants, and participation rate was 82 % after 12 months. We found high correlations (0.96) for self-reported vs. registry based data and no difference in participation rate or data completeness according to questionnaire length. Overall, the internet based methods seem promising and we plan to launch the full study.

Change in lifestyle behaviors and diabetes risk: evidence from a population-based cohort study with 10 year follow-up.

Science.gov (United States)

Feldman, Adina L; Long, Gráinne H; Johansson, Ingegerd; Weinehall, Lars; Fhärm, Eva; Wennberg, Patrik; Norberg, Margareta; Griffin, Simon J; Rolandsson, Olov

2017-03-29

Promoting positive changes in lifestyle behavior in the whole population may be a feasible and effective approach to reducing type 2 diabetes burden, but the impact of population shifts of modifiable risk factors remains unclear. Currently most of the evidence on modifiable lifestyle behavior and type 2 diabetes risk on a population level comes from studies of between-individual differences. The objective of the study was to investigate the association and potential impact on disease burden for within-individual change in lifestyle behavior and diabetes risk. Population-based prospective cohort study of 35,680 participants aged 30-50 at baseline in 1990-2003 in Västerbotten County, Sweden (follow-up until 2013). Five self-reported modifiable lifestyle behaviors (tobacco use, physical activity, alcohol intake, dietary fiber intake and dietary fat intake) were measured at baseline and 10 year follow-up. Lifestyle behaviors were studied separately, and combined in a score. Incident diabetes was detected by oral glucose tolerance tests. Multivariate logistic regression models and population attributable fractions (PAF) were used to analyze the association between change in lifestyle behavior between baseline and 10 year follow-up, and risk of incident diabetes. Incident diabetes was detected in 1,184 (3.3%) participants at 10 year follow-up. There was a reduced diabetes risk associated with increase in dietary fiber intake, odds ratio (OR) 0.79 (95% confidence interval (CI) 0.66, 0.96) for increase of at least one unit standard deviation (3.0 g/1,000 kcal) of the baseline distribution, PAF 16.0% (95% CI 4.2, 26.4%). Increase in the lifestyle behavior score was associated with reduced diabetes risk, OR 0.92 (95% CI 0.85, 0.99) per unit increase of the score. These results support a causal link between lifestyle behavior and type 2 diabetes incidence. A small shift in lifestyle behaviors, in particular intake of dietary fiber, has the potential to reduce diabetes

Follow-up care for breast cancer survivors: improving patient outcomes

Directory of Open Access Journals (Sweden)

Chopra I

2014-08-01

Full Text Available Ishveen Chopra,1 Avijeet Chopra2 1Department of Pharmacy Administration, Duquesne University, Pittsburgh, PA, USA; 2Department of Molecular and Cell Biology, University of Connecticut, Storrs, CT, USA Background: Appropriate follow-up care is important for improving health outcomes in breast cancer survivors (BCSs and requires determination of the optimum intensity of clinical examination and surveillance, assessment of models of follow-up care such as primary care-based follow-up, an understanding of the goals of follow-up care, and unique psychosocial aspects of care for these patients. The objective of this systematic review was to identify studies focusing on follow-up care in BCSs from the patient's and physician's perspective or from patterns of care and to integrate primary empirical evidence on the different aspects of follow-up care from these studies. Methods: A comprehensive literature review and evaluation was conducted for all relevant publications in English from January 1, 1990 to December 31, 2013 using electronic databases. Studies were included in the final review if they focused on BCS’s preferences and perceptions, physician's perceptions, patterns of care, and effectiveness of follow-up care. Results: A total of 47 studies assessing the different aspects of follow-up care were included in the review, with a majority of studies (n=13 evaluating the pattern of follow-up care in BCSs, followed by studies focusing on BCS's perceptions (n=9 and preferences (n=9. Most of the studies reported variations in recommended frequency, duration, and intensity of follow-up care as well as frequency of mammogram screening. In addition, variations were noted in patient preferences for type of health care provider (specialist versus non-specialist. Further, BCSs perceived a lack of psychosocial support and information for management of side effects. Conclusion: The studies reviewed, conducted in a range of settings, reflect variations in

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

Follow-up of colorectal cancer patients: quality of life and attitudes towards follow-up

NARCIS (Netherlands)

Stiggelbout, A. M.; de Haes, J. C.; Vree, R.; van de Velde, C. J.; Bruijninckx, C. M.; van Groningen, K.; Kievit, J.

1997-01-01

The aims of our study were to assess the effect of follow-up on the quality of life of colorectal cancer patients and to assess the attitudes of patients towards follow-up as a function of patient characteristics. Patients who had been treated with curative intent were selected from four types of

Follow-up duration influences the relative importance of OGTT and optimal timing of glucose measurements for predicting future type 2 diabetes

DEFF Research Database (Denmark)

Nielsen, Mette Lundgren; Pareek, Manan; Leósdóttir, Margrét

2016-01-01

was recorded using registries. The performance of OGTT added to a clinical prediction model (age, body mass index (BMI), diastolic blood pressure, fasting BG, triglycerides, and family history of diabetes) was assessed using Harrell's concordance index (C-index) and integrated discrimination improvement (IDI......OBJECTIVE: To examine the impact of follow-up duration on the incremental prognostic yield of a baseline oral glucose tolerance test (OGTT) for predicting type 2 diabetes and to assess the discrimination ability of blood glucose (BG) obtained at different time points during OGTT. DESIGN......: A prospective, population-based cohort study (Malmö Preventive Project) with inclusion of subjects from 1974 to 1992. METHODS: A total of 5256 men without diabetes, who had BG measured at 0, 20, 40, 60, 90, and 120 min during OGTT (30 g/m2 glucose), were followed for 30 years. Incident type 2 diabetes...

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.

Results of remote follow-up and monitoring in young patients with cardiac implantable electronic devices.

Science.gov (United States)

Silvetti, Massimo S; Saputo, Fabio A; Palmieri, Rosalinda; Placidi, Silvia; Santucci, Lorenzo; Di Mambro, Corrado; Righi, Daniela; Drago, Fabrizio

2016-01-01

Remote monitoring is increasingly used in the follow-up of patients with cardiac implantable electronic devices. Data on paediatric populations are still lacking. The aim of our study was to follow-up young patients both in-hospital and remotely to enhance device surveillance. This is an observational registry collecting data on consecutive patients followed-up with the CareLink system. Inclusion criteria were a Medtronic device implanted and patient's willingness to receive CareLink. Patients were stratified according to age and presence of congenital/structural heart defects (CHD). A total of 221 patients with a device - 200 pacemakers, 19 implantable cardioverter defibrillators, and two loop recorders--were enrolled (median age of 17 years, range 1-40); 58% of patients were younger than 18 years of age and 73% had CHD. During a follow-up of 12 months (range 4-18), 1361 transmissions (8.9% unscheduled) were reviewed by technicians. Time for review was 6 ± 2 minutes (mean ± standard deviation). Missed transmissions were 10.1%. Events were documented in 45% of transmissions, with 2.7% yellow alerts and 0.6% red alerts sent by wireless devices. No significant differences were found in transmission results according to age or presence of CHD. Physicians reviewed 6.3% of transmissions, 29 patients were contacted by phone, and 12 patients underwent unscheduled in-hospital visits. The event recognition with remote monitoring occurred 76 days (range 16-150) earlier than the next scheduled in-office follow-up. Remote follow-up/monitoring with the CareLink system is useful to enhance device surveillance in young patients. The majority of events were not clinically relevant, and the remaining led to timely management of problems.

The longitudinal course and impact of non-restorative sleep: a five-year community-based follow-up study.

Science.gov (United States)

Zhang, Jihui; Lam, Siu-Ping; Li, Shirley Xin; Li, Albert Martin; Wing, Yun-Kwok

2012-06-01

There is a dearth of data on the longitudinal course and outcome of non-restorative sleep (NRS). A total of 2291 middle-aged adults (mean [SD]=46.3 [5.1] years old, 50.0% males at follow-up) were recruited into a 5-year follow-up study. NRS was defined as morning unfreshness after getting up ≥ 3 times/week over the past 12 months. Socio-demographics, other concurrent sleep complaints, and daytime symptoms were measured at baseline. Chronic medical problems in the past one year were additionally assessed at follow up. Several sleep problems (including other insomnia subtypes, snoring, and nightmares) and daytime symptoms were strongly associated with NRS at baseline. NRS had considerable persistence (31.9%), partial remission (22.7%), and incidence rate (5.2%). New incidence of NRS was predicted by female gender (AOR=1.67), preferring not to get up in the morning (AOR=1.96), fatigue (AOR=2.18), and short sleep duration (AOR=1.87), whereas persistence of NRS was predicted by difficulty initiating sleep (AOR=2.36). In the fully adjusted models, baseline NRS was significantly associated with multiple medical disorders at follow-up, including frequent allergic rhinitis (AOR=1.62) and laryngopharyngitis (AOR=2.47), diabetes mellitus (AOR=2.63), gastroesophageal reflux disease (AOR=2.03), eye problems (AOR=2.45), eczema (AOR=2.18), and poor mental health (AOR=1.68). The persistent course and independent association of NRS with adverse medical and mental outcomes argue for a distinct nosological status and the need for rigorous medical attention. Copyright © 2012 Elsevier B.V. All rights reserved.

Psychopathology from adolescence into young adulthood: an 8-year follow-up study.

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Ferdinand, R F; Verhulst, F C

1995-11-01

This study investigated the stability of behavioral and emotional problems from adolescence into young adulthood. Subjects from the general population (N = 459), aged 13-16 years, were evaluated initially with the Child Behavior Checklist (completed by parents) and 8 years later with the Young Adult Self-Report. The scoring format and factor structure of the two assessment instruments are similar; syndromes constructed from the two instruments are based on parents', teachers', and self-report information derived from large clinical samples. Signs of maladjustment also were assessed at follow-up through interviews. Of the individuals with total problem scores in the deviant range on the Child Behavior Checklist, 27.3% had total problem scores in the deviant range on the Young Adult Self-Report at follow-up. The probability of having a total problem score in the deviant range at follow-up was raised 7.4-fold by having deviant-range scores on the Child Behavior Checklist somatic complaints and anxious/depressed syndromes (simultaneously) at the initial assessment. Referral to mental health services was predicted by deviant-range scores on the anxious/depressed syndrome, while suicide attempts were predicted by deviance on the withdrawn syndrome. Adolescent problems tended to persist into young adulthood to a moderate degree. High rates of withdrawal from social contacts, anxiety or depression, somatic complaints without known medical origin, social problems, attention problems, delinquent behavior, and aggressive behavior during adolescence were risk factors for specific types of psychopathology and maladjustment at 8-year follow-up. The presence of psychopathology in adolescence should not be regarded as normative.

Preeclampsia complicated by advanced maternal age: a registry-based study on primiparous women in Finland 1997–2008

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Lamminpää Reeta

2012-06-01

Full Text Available Abstract Background Preeclampsia is a frequent syndrome and its cause has been linked to multiple factors, making prevention of the syndrome a continuous challenge. One of the suggested risk factors for preeclampsia is advanced maternal age. In the Western countries, maternal age at first delivery has been steadily increasing, yet few studies have examined women of advanced maternal age with preeclampsia. The purpose of this registry-based study was to compare the obstetric outcomes in primiparous and preeclamptic women younger and older than 35 years. Methods The registry-based study used data from three Finnish health registries: Finnish Medical Birth Register, Finnish Hospital Discharge Register and Register of Congenital Malformations. The sample contained women under 35 years of age (N = 15,437 compared with those 35 and over (N = 2,387 who were diagnosed with preeclampsia and had their first singleton birth in Finland between 1997 and 2008. In multivariate modeling, the main outcome measures were Preterm delivery (before 34 and 37 weeks, low Apgar score (5 min., small-for-gestational-age, fetal death, asphyxia, Cesarean delivery, induction, blood transfusion and admission to a Neonatal Intensive Care Unit. Results Women of advanced maternal age (AMA exhibited more preeclampsia (9.4% than younger women (6.4%. They had more prior terminations (25 ( Conclusions Preeclampsia is more common in women with advanced maternal age. Advanced maternal age is an independent risk factor for adverse outcomes in first-time mothers with preeclampsia.

I RBH - First Brazilian Hypertension Registry.

Science.gov (United States)

Jardim, Paulo César Brandão Veiga; Souza, Weimar Kunz Sebba Barroso de; Lopes, Renato Delascio; Brandão, Andréa Araújo; Malachias, Marcus V Bolívar; Gomes, Marco Mota; Moreno Júnior, Heitor; Barbosa, Eduardo Costa Duarte; Póvoa, Rui Manoel Dos Santos

2016-08-01

A registry assessing the care of hypertensive patients in daily clinical practice in public and private centers in various Brazilian regions has not been conducted to date. Such analysis is important to elucidate the effectiveness of this care. To document the current clinical practice for the treatment of hypertension with identification of the profile of requested tests, type of administered treatment, level of blood pressure (BP) control, and adherence to treatment. National, observational, prospective, and multicenter study that will include patients older than 18 years with hypertension for at least 4 weeks, following up in public and private centers and after signing a consent form. The study will exclude patients undergoing dialysis, hospitalized in the previous 30 days, with class III or IV heart failure, pregnant or nursing, with severe liver disease, stroke or acute myocardial infarction in the past 30 days, or with diseases with a survival prognosis crisis, cardiocirculatory events, and cardiovascular death, while secondary outcomes will be hospitalization for heart failure and requirement of dialysis. A subgroup analysis of 15% of the sample will include noninvasive central pressure evaluation at baseline and study end. The estimated sample size is 3,000 individuals for a prevalence of 5%, sample error of 2%, and 95% confidence interval. The results will be presented after the final evaluation, which will occur at the end of a 1-year follow-up. The analysis of this registry will improve the knowledge and optimize the treatment of hypertension in Brazil, as a way of modifying the prognosis of cardiovascular disease in the country.

Fractures as an independent predictor of functional decline in older people: a population-based study with an 8-year follow-up.

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Piirtola, Maarit; Löppönen, Minna; Vahlberg, Tero; Isoaho, Raimo; Kivelä, Sirkka-Liisa; Räihä, Ismo

2012-01-01

Fractures among older people are common, but there is scant evidence about the impact of fractures on functional decline in an unselected older population. The objective of this study was to analyze the impact of lower and upper body fractures on functional performance among older adults during an 8-year follow-up. A population-based cohort of 616 Finnish persons aged 65 and over was followed for up to 8 years, and the association between fractures and the risk of short-term (0-2 years) and long-term (up to 8 years) functional decline was analyzed. Fractures were categorized according their functional influence on mobility and activities of daily living (ADL) into lower and upper body fractures. Multivariate cumulative logistic regression model was used in the analyses. During the 8-year follow-up, 112 (18%) persons sustained at least one fracture. In the multivariate analyses, lower body fractures predicted both short-term and long-term decline in mobility [cumulative odds ratio (COR) 4.7, 95% confidence interval (95% CI) 1.9-11.7 and COR 2.6, 95% CI 1.1-6.2, respectively] and in ADL performance (COR 3.1, 95% CI 1.3-7.6 and COR 4.7, 95% CI 2.0-11.4, respectively). Upper body fractures predicted decline in ADL performance during the long-term follow-up (COR 2.5, 95% CI 1.3-4.8). Pre-fracture functional decline and inactivity in leisure time physical exercise were independently associated with the risk of decline in extensive activities. Fractures have an independent influence on the development of functional decline in older persons regardless of the pre-fracture health. Prevention of falls and fractures and improvement of treatment, rehabilitation and follow-up process after fractures are needed. Copyright © 2011 S. Karger AG, Basel.

Ute Unit: Study Guide and Follow Up Activities.

Science.gov (United States)

North Conejos School District, Capulin, CO.

The study guide and follow-up activities were designed primarily to give students a feeling of Ute life in the San Luis Valley in Colorado. The unit begins with six Southern Ute stories about the wolf and coyote, the race between the skunk and the coyote, the frog and the eagle, why the frog croaks, the bear (Que Ye Qat), and the two Indian…

Medication overuse headache: a critical review of end points in recent follow-up studies

DEFF Research Database (Denmark)

Hagen, Knut; Jensen, Rigmor; Bøe, Magne Geir

2010-01-01

in headache index at the end of follow-up were reported in only one and two of nine studies, respectively. The present review demonstrated a lack of uniform end points used in recently published follow-up studies. Guidelines for presenting follow-up data on MOH are needed and we propose end points......No guidelines for performing and presenting the results of studies on patients with medication overuse headache (MOH) exist. The aim of this study was to review long-term outcome measures in follow-up studies published in 2006 or later. We included MOH studies with >6 months duration presenting...... a minimum of one predefined end point. In total, nine studies were identified. The 1,589 MOH patients (22% men) had an overall mean frequency of 25.3 headache days/month at baseline. Headache days/month at the end of follow-up was reported in six studies (mean 13.8 days/month). The decrease was more...

Fasa Registry on Acute Myocardial Infarction (FaRMI: Feasibility Study and Pilot Phase Results.

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Ehsan Bahramali

Full Text Available Myocardial infarction (MI is the leading cause of death in Iran. Every attempt to improve treatment patterns and patient outcomes needs a surveillance system to both consider the efficacy and safety measures. Fasa Registry on Myocardial Infarction (FaRMI is the first population-based registry for acute MI in Iran targeted to provide meticulous description of patients' characteristics, to explore the management patterns of these patients, to discover the degree of adherence to the practice guidelines, and to investigate the determinants of poor in-hospital and later outcomes.A diagnosis of acute MI (type I, II and III was made upon the accepted criteria by the attending cardiologists and types IV and V MI were excluded. Two registrar nurses gathered data on demographics, place of residence and ethnicity, past medical history, risk factors, and the clinical course. Management patterns in the pre-hospital setting, during the hospital stay and at the discharge time were recorded. Routine laboratory results and cardiac biomarkers on three consecutive days were registered.pilot phase included the first 95 patients, 63.5% of whom were men and 31.5% were women. With a mean age of 62.89±13.75 years among participants, the rate of premature MI was 31.8%. ST segment elevation MI accounted for 68.2% cases and inferior wall was the most prevalent region involved followed by anterior and posterior walls.Obtained data on the characteristics of patients suffering an MI event revealed the major determinants of delay in initiation of therapies and contributors of poor outcome. Completeness of data was guaranteed upon involvement of multiple checkpoints and data quality was secured by means of automatic validation processes in addition to weekly physicians' roundups.Execution of FaRMI in the form presented is feasible and it will build up a comprehensive population-based registry for MI in the region.

77 FR 42317 - Establish a Patient-Based Registry To Evaluate the Association of Gadolinium Based Contrast...

Science.gov (United States)

2012-07-18

... Quality Assurance (QA) registry of patients with renal failure who received GBCAs as the basis for a... of the development of a patient-based registry to evaluate the association of gadolinium based..., and a copy to Ira Krefting, Center for Drug Evaluation and Research, Division of Medical Imaging...

The effect of enteral tube feeding in cystic fibrosis: A registry based study.

Science.gov (United States)

Libeert, Denis; Declercq, Dimitri; Wanyama, Simeon; Thomas, Muriel; Van Daele, Sabine; De Baets, Frans; Van Biervliet, Stephanie

2018-03-01

Long-term effect of enteral tube feeding (ETF) in cystic fibrosis (CF) remains equivocal. A Belgian CF registry based, retrospective, longitudinal study, evaluated the pre- and post- ETF (n = 113) clinical evolution and compared each patient with 2 age, gender, pancreatic status and genotype class-matched controls. At baseline ETF had a worse BMI z-score (p ETF, had already a significant worse nutritional status and pulmonary function at first entry in the registry. Both parameters displayed a significant decline before ETF-introduction. ETF had more hospitalization and intravenous antibiotic (IVAB) treatment days (p ETF introduction hospitalizations and IVAB decreased significantly. After ETF-introduction BMI z-score recuperated towards the original curve before the decline, but remained below the controls. Starting ETF had no effect on rate of height gain in children. The pre-index FEV1 decline (-1.52%/year (p = 0.002)) stabilized to +0.39%/year afterwards. Controls displayed decline of -0.48%/year (p ETF introduction improved BMI z-score and stabilized FEV1, associated with less hospitalizations and IVAB treatments. Higher mortality and transplantation in the ETF cases, leading to drop-outs, made determination of the effect size difficult. Copyright © 2018 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.

[Short-term prognosis of transient ischemic attacks. Mexican multicenter stroke registry].

Science.gov (United States)

Arauz, Antonio; Cantú, Carlos; Ruiz-Sandoval, José Luis; Villarreal-Careaga, Jorge; Barinagarrementeria, Fernando; Murillo-Bonilla, Luis; Fernández, José Antonio; Torres, Bertha; León, Carolina; Rodríguez-Leyva, Idelfonso; Rangel-Guerra, Ricardo

2006-01-01

There are no data on Mexican population referring to frequency and prognosis of transient ischemic attacks (TIA). The purpose of the present study was to: (1) estimate the prevalence, vascular risk factors and short-term outcome in patients with TIA included in the first Mexican registry of cerebrovascular disease, and (2) analyze the acute care provided in these patients. This national registry of cerebrovascular diseases is a multicenter, observational, and hospital-based registry that was conducted from November 2002 to October 2004. The registry was developed to improve our knowledge in Mexico regarding risk factors profile, outcome, current diagnostic and treatment strategies, and short-term follow-up in patients with acute cerebral ischemia. Standardized data assessment was used by all centers which included information on demographics, pre-hospital events (including stroke onset and arrival to hospital), emergency department triage and workup. Short-term outcome was evaluated at day 30. Of this registry, TIA cases were selected and associated risk factors, clinical characteristics, diagnosis and treatment were analyzed. During the study time period, 2,000 patients were enrolled; 97 (5%) with diagnosis of TIA; 51 women and 46 men, mean age 69.3 +/- 11.4 years. Among these 97 patients; 51 (52.6%) were admitted to the hospital for evaluation. The main risk factors were; age > or = 65 years in 74%, hypertension in 64%, diabetes in 45%, and dislipidemia in 36% and obesity in 31%. The affected arterial territory was carotid TIA in 74% and vertebrobasilar in 26%. TIA was attributed to atherosclerosis in 63% of the patients, cardioembolism in 17%, and small vessels disease in 5%. At 30 days follow-up; three patients died during the initial evaluation (two secondary to cardiac arrhythmia, and one secondary to pneumonia). Among 14 of the 94 survivors (14.9%) we documented an early stroke recurrence, including cerebral infarction in nine patients (9.6%) and new TIA in

British Society of Interventional Radiology (BSIR) Inferior Vena Cava (IVC) Filter Registry

Energy Technology Data Exchange (ETDEWEB)

Uberoi, Raman, E-mail: raman.Uberoi@orh.nhs.uk; Tapping, Charles Ross [Oxford University Hospitals, John Radcliffe Hospital, Department of Radiology (United Kingdom); Chalmers, Nicholas [Manchester Royal Infirmary, Department of Radiology (United Kingdom); Allgar, Victoria [University of York, Hull and York Medical School (United Kingdom)

2013-12-15

Purpose: The British Society of Interventional Radiology (BSIR) Inferior Vena Cava (IVC) Filter Registry was produced to provide an audit of current United Kingdom (UK) practice regarding placement and retrieval of IVC filters to address concerns regarding their safety. Methods: The IVC filter registry is a web-based registry, launched by the BSIR on behalf of its membership in October 2007. This report is based on prospectively collected data from October 2007 to March 2011. This report contains analysis of data on 1,434 IVC filter placements and 400 attempted retrievals performed at 68 UK centers. Data collected included patient demographics, insertion and retrieval data, and patient follow-up. Results: IVC filter use in the majority of patients in the UK follows accepted CIRSE guidelines. Filter placement is usually a low-risk procedure, with a low major complication rate (<0.5 %). Cook Gunther Tulip (560 filters: 39 %) and Celect (359 filters: 25 %) filters constituted the majority of IVC filters inserted, with Bard G2, Recovery filters, Cordis Trapease, and OptEase constituting most of the remainder (445 filters: 31 %). More than 96 % of IVC filters deployed as intended. Operator inexperience (<25 procedure) was significantly associated with complications (p < 0.001). Of the IVC filters initially intended for temporary placement, retrieval was attempted in 78 %. Of these retrieval was technically successful in 83 %. Successful retrieval was significantly reduced for implants left in situ for >9 weeks versus those with a shorter dwell time. New lower limb deep vein thrombosis (DVT) and/or IVC thrombosis was reported in 88 patients following filter placement, there was no significant difference of incidence between filter types. Conclusions: This registry report provides interventional radiologists and clinicians with an improved understanding of the technical aspects of IVC filter placement to help improve practice, and the potential consequences of IVC filter

Radiographic follow-up study of Little Leaguer's shoulder

Energy Technology Data Exchange (ETDEWEB)

Kanematsu, Yoshiji; Iwase, Takenobu [Tokushima National Hospital, Department of Orthopaedic Surgery, Tokushima (Japan); Matsuura, Tetsuya; Suzue, Naoto; Sairyo, Koichi [University of Tokushima Graduate School, Department of Orthopedics, Institute of Health Bioscience, Tokushima (Japan); Kashiwaguchi, Shinji [Japan Community Health Care Organization, Tokyo Shinjuku Medical Center, Department of Orthopaedic Surgery, Tokyo (Japan); Iwame, Toshiyuki [Tokushima Prefectural Central Hospital, Department of Orthopaedic Surgery, Tokushima (Japan)

2015-01-15

Little Leaguer's shoulder is a syndrome involving the proximal humeral epiphyseal plate. Conservative treatment usually resolves the symptoms. However, there are no reports of a radiographic follow-up study of this disease. The purpose of this study was to show the radiographic healing process of Little Leaguer's shoulder. A total of 19 male baseball players diagnosed as having Little Leaguer's shoulder were retrospectively evaluated. The mean age at first presentation was 12.7 years. External rotation anteroposterior radiographs of the shoulder were taken. All patients were treated with rest from throwing, and no throwing was recommended until remodeling was confirmed. Follow-up radiographs were taken at 1-month intervals to assess healing. All patients were observed until healing was confirmed radiographically, after which they returned to baseball. The mean follow-up period was 8.5 months. In addition to radiography, patients were asked whether they had any symptoms and whether they had been able to return to baseball. At the first examination, radiographs showed a wider epiphyseal plate of the throwing side compared with the asymptomatic contralateral shoulder. Healing was observed in all cases. Healing occurred first along the medial side and was then extended laterally. The mean time required for healing was 4.7 months. All patients were able to return to playing baseball at their pre-injury level of play and were asymptomatic when examined at the final follow-up. The healing process of Little Leaguer's shoulder advanced from medial to lateral, and healing was achieved about 5 months after initial examination. (orig.)

The Latin American DILI Registry Experience: A Successful Ongoing Collaborative Strategic Initiative

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Fernando Bessone

2016-02-01

Full Text Available Drug induced liver injury (DILI is a rare but well recognized serious adverse reaction. Pre-marketing studies may not detect liver injury, and DILI becomes very often apparent after the drug is launched to the market. Specific biomarkers for DILI prediction or diagnosis are not available. Toxic liver reactions present with a wide spectrum of phenotypes and severity, and our knowledge on the mechanisms underlying idiosyncratic reactions and individual susceptibility is still limited. To overcome these limitations, country-based registries and multicenter research networks have been created in Europe and North America. Reliable epidemiological data on DILI in Latin America (LA, a region with a large variety of ethnic groups, were however lacking. Fortunately, a LA network of DILI was set up in 2011, with the support of the Spanish DILI Registry from the University of Malaga. The primary aim of the Latin DILI Network (LATINDILIN Registry was to prospectively identify bona fide DILI cases and to collect biological samples to study genetic biomarkers. Physicians involved in the project must complete a structured report form describing the DILI case presentation and follow-up which is submitted to a Coordinator Center in each country, where it is further assessed for completeness. During the last four years, several LA countries (Argentina, Uruguay, Chile, Mexico, Paraguay, Brazil, Ecuador, Peru, Venezuela and Colombia have joined the network and committed with this project. At that point, to identify both our strengths and weaknesses was a very important issue. In this review, we will describe how the LATINDILI Registry was created. The aims and methods to achieve these objectives will be discussed in depth. Additionally, both the difficulties we have faced and the strategies to solve them will be also pinpointed. Finally, we will report on our preliminary results, and discuss ideas to expand and to keep running this network.

Mortality in acromegaly: a 20-year follow-up study.

Science.gov (United States)

Ritvonen, Elina; Löyttyniemi, Eliisa; Jaatinen, Pia; Ebeling, Tapani; Moilanen, Leena; Nuutila, Pirjo; Kauppinen-Mäkelin, Ritva; Schalin-Jäntti, Camilla

2016-06-01

It is unclear whether mortality still is increased in acromegaly and whether there are gender-related differences. We dynamically assessed outcome during long-term follow-up in our nationwide cohort. We studied standardized mortality ratios (SMRs) relative to the general population and causes of death in acromegaly (n=333) compared with age- and gender-matched controls (n=4995). During 20 (0-33) years follow-up, 113 (34%) patients (n=333, 52% women) and 1334 (27%) controls (n=4995) died (P=0.004). SMR (1.9, 95% CI: 1.53-2.34, Pacromegaly. Overall distribution of causes of death (Pacromegaly, but not in controls, causes of deaths shifted from 44% cardiovascular and 28% cancer deaths during the first decade, to 23% cardiovascular and 35% cancer deaths during the next two decades. In acromegaly, cancer deaths were mostly attributed to pancreatic adenocarcinoma (n=5), breast (n=4), lung (n=3) and colon (n=3) carcinoma. In acromegaly, men were younger than women at diagnosis (median 44.5 vs 50 years, Pacromegaly, men are younger at diagnosis and death than women. Compared with controls, mortality is increased during 20 years of follow-up, especially in women. Causes of deaths shift from predominantly cardiovascular to cancer deaths. © 2016 Society for Endocrinology.

Prospects for Ground-Based Detection and Follow-up of TESS-Discovered Exoplanets

Science.gov (United States)

Varakian, Matthew; Deming, Drake

2018-01-01

The Transiting Exoplanet Survey Satellite (TESS) will monitor over 200,000 main sequence dwarf stars for exoplanetary transits, with the goal of discovering small planets orbiting stars that are bright enough for follow-up observations. We here evaluate the prospects for ground-based transit detection and follow-up of the TESS-discovered planets. We focus particularly on the TESS planets that only transit once during each 27.4 day TESS observing window per region, and we calculate to what extent ground-based recovery of additional transits will be possible. Using simulated exoplanet systems from Sullivan et al. and assuming the use of a 60-cm telescope at a high quality observing site, we project the S/N ratios for transits of such planets. We use Phoenix stellar models for stars with surface temperatures from 2500K to 12000K, and we account for limb darkening, red atmospheric noise, and missed transits due to the day-night cycle and poor weather.

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...

[One year follow-up after stroke. A preliminary feasibility study in the Józsefváros district of Budapest].

Science.gov (United States)

Szocs, Ildikó; Szatmári, Szabolcs; Fekete, Klára; Orbán-Kis, Károly; Vastagh, Ildikó; Folyovich, András; Ajtay, András; Bereczki, Dániel

2012-03-30

Stroke is a major public health issue in Hungary with considerable regional differences in mortality. We have limited information to explain such regional differences. To assess these differences, we would need comparative followup studies optimally carried out by personal contact with the patient or the carer. According to several epidemiological studies, follow-up can be carried out with significantly lower cost and similar efficiency by telephone contact or regular mail. In this pilot study we intend to assess: 1. the efficacy of telephone follow-up one year after stroke in this geographical region 2. whether the efficacy of follow-up can be further increased with questionnaires sent out by regular mail 3. whether telephone and mail-based assessment is sufficient to perform a larger population based study. We included 135 patients hospitalized consecutively for acute cerebrovascular disease (stroke or TIA) by the Department of Neurology, Semmelweis University in January and February of 2008. Based on residence, patients were divided into three groups: those living in the least wealthy district of Budapest (i.e. District-8); those living in other districts of the city; and those living in suburban areas. One year after the hospital treatment follow-up was possible by telephone in 76%. Further 12 patients could be contacted by questionnaire sent out by regular mail. Efficacy of follow-up was altogether 84%. Even in this small group of patients, we have found a tendency for more severe strokes (p=0.06) and higher acute case fatality (32% vs. 5%, p=0.029) in residents of District-8 of Budapest compared to those residing in more wealthy districts of the city and in suburban areas. Survival rate one year after stroke or TIA was only 39% in those living in District-8, 66% in those living in other districts and 75% in suburban dwellers (p=0.006). Telephone and mail-based questionnaires are insufficient for follow-up in these regions even when applied in combination

An ontology-based approach to patient follow-up assessment for continuous and personalized chronic disease management.

Science.gov (United States)

Zhang, Yi-Fan; Gou, Ling; Zhou, Tian-Shu; Lin, De-Nan; Zheng, Jing; Li, Ye; Li, Jing-Song

2017-08-01

Chronic diseases are complex and persistent clinical conditions that require close collaboration among patients and health care providers in the implementation of long-term and integrated care programs. However, current solutions focus partially on intensive interventions at hospitals rather than on continuous and personalized chronic disease management. This study aims to fill this gap by providing computerized clinical decision support during follow-up assessments of chronically ill patients at home. We proposed an ontology-based framework to integrate patient data, medical domain knowledge, and patient assessment criteria for chronic disease patient follow-up assessments. A clinical decision support system was developed to implement this framework for automatic selection and adaptation of standard assessment protocols to suit patient personal conditions. We evaluated our method in the case study of type 2 diabetic patient follow-up assessments. The proposed framework was instantiated using real data from 115,477 follow-up assessment records of 36,162 type 2 diabetic patients. Standard evaluation criteria were automatically selected and adapted to the particularities of each patient. Assessment results were generated as a general typing of patient overall condition and detailed scoring for each criterion, providing important indicators to the case manager about possible inappropriate judgments, in addition to raising patient awareness of their disease control outcomes. Using historical data as the gold standard, our system achieved a rate of accuracy of 99.93% and completeness of 95.00%. This study contributes to improving the accessibility, efficiency and quality of current patient follow-up services. It also provides a generic approach to knowledge sharing and reuse for patient-centered chronic disease management. Copyright © 2017 Elsevier Inc. All rights reserved.

Up to 10-year follow-up of the Oxford medial partial knee arthroplasty - 695 cases from a single institution

DEFF Research Database (Denmark)

Wagner Kristensen, Per; Holm, Henriette A; Varnum, Claus

2013-01-01

Partial knee arthroplasty (PKA) has shown obvious advantages compared to total knee arthroplasty, but survival of PKA from different institutions and registries has differed. In our institution, 695 consecutive Oxford medial PKAs were performed from 2002 to 2011 with mean follow-up of 4.6 years....... The overall 10.7-year survival rate was 85.3% (95% CI: 78.7%-90.0%), and no difference in survival for gender and age younger or older than 60 years was found. One year after PKA, 94.3% were very satisfied or satisfied, as were 93.6% six years postoperatively. The revision rate was 7.3% (n=51), and the most...

Predicting failure to follow-up screened high blood pressure in Japan: a cohort study.

Science.gov (United States)

Kuriyama, Akira; Takahashi, Yoshimitsu; Tsujimura, Yuka; Miyazaki, Kikuko; Satoh, Toshihiko; Ikeda, Shunya; Nakayama, Takeo

2015-09-01

This study aimed to determine the prevalence and predictors of working-age individuals who did not follow-up for possible hypertension that was detected in the population-based screening. We conducted a retrospective cohort study, using the database of health insurance claims and health checkups from several health insurance societies for employees in Japan. Screened participants aged ≥20 years, with possible hypertension (systolic blood pressure ≥140 mmHg and/or diastolic blood pressure ≥90 mmHg) and without known antihypertensive treatment, were included. The outcome was lack of clinical follow-up for possible hypertension within 6 months of the latest screening. Multivariate logistic regression analysis was performed to identify predictors. Among 17,173 participants (15,793 males and 1380 females) who were identified as possible hypertensives, 89.7 and 82.3% of them, respectively, did not consult physicians for screened possible hypertension. Predictors of no clinical follow-up for males included younger age, lower body mass index (BMI), lower hemoglobin A1c and milder hypertension. Predictors for females included younger age, lower BMI and being insured. Approximately 80% of participants failed to consult physicians even with positive screening results. Younger individuals with lower BMI are at high risk of no clinical follow-up. © The Author 2014. Published by Oxford University Press on behalf of Faculty of Public Health. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

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.

Bladder dysfunction in multiple sclerosis: a 6-year follow-up study.

Science.gov (United States)

Kisic Tepavcevic, Darija; Pekmezovic, Tatjana; Dujmovic Basuroski, Irena; Mesaros, Sarlota; Drulovic, Jelena

2017-03-01

Bladder dysfunction (BD) is the most common autonomic disturbance in multiple sclerosis, but often overlooked and undertreated. The purpose of this longitudinal study was to explore the changes in the frequency of BD symptoms in MS cohort after a period of 3 and 6 years of follow-up, as well as to investigate the correlations between the presence of BD symptoms and both clinical characteristics and the health-related quality of life (HRQoL) at each subsequent point of estimation. The study population comprises a cohort of 93 patients with MS (McDonald's criteria, 2001). At each time point (baseline, and at the 3- and 6-year follow-up) of estimation, Expanded Disability Status Scale, Hamilton Rating Scale for Depression, Fatigue Severity Scale, Szasz Sexual Functioning Scale and HRQoL (measured by MSQoL-54) were assessed. The proportion of patients with at least one symptom of BD significantly increased over time, for both men and women (from 48.1% at baseline to 51.9% after 3 years and to 71.4% after 6 years of follow-up for males and from 45.5% at baseline to 50.0% after 3 years and to 66.7% after 6 years of follow-up for females). The most common BD problem was urgency of urination. The presence of BD was statistically significantly associated with higher level of physical disability, sexual dysfunction and HRQoL at each point of follow-up, for both men and women. Our results suggested outstanding frequency of BD in patients with MS, with increasing tendency over time.

[In hospital and mid-term outcome of patients with NIR stent implantation: multicenter ESPORT-NIR registry].

Science.gov (United States)

Iñiguez, A; García, E; Seabra, R; Bordes, P; Bethencourt, A; Rigla, J

2001-05-01

Despite improvements in the results and techniques of catheter-based revascularization, few studies have evaluated the clinical results of the application of new stent designs. We describe the in-hospital and mid-term outcome of patients undergoing a stent NIR implantation. At least 1 Stent NIR was implanted in 1.004 patients (1.136 lesions) recruited from 50 centers in an international, multicenter, prospective, registry (Spain and Portugal NIR stent registry). Inclusion criteria were objective coronary ischemia related to a severe de novo lesion or first restenosis in native vessels with a reference diameter >= 2.75 mm. The primary end-point was the incidence of major adverse cardiac events within the first 7 months of follow-up. The mean age of the patients was 60 years and 82% were male. Angioplasty was indicated due to unstable angina in 61% of the cases. Stent implantation was successfully achieved in 99.6%. Clinical success (angiographic success without in-hospital major events) was achieved in 98.6% of patients. The rate of angiographic restenosis (> 50% stenosis narrowing) was 16% (CI 95%; 11.7-21.2). The accumulated major cardiac adverse event rate at seven months of follow-up was 8.7%: death (0.9%), acute myocardial infarction (1.2%) and target lesion revascularization (6.6%). In the wide setting of the population included in the ESPORT-NIR registry, stent NIR implantation was a highly effective therapy with a good mid-term clinical and angiographic outcome.

Patient Satisfaction With an Early Smartphone-Based Cosmetic Surgery Postoperative Follow-Up.

Science.gov (United States)

Pozza, Edoardo Dalla; D'Souza, Gehaan F; DeLeonibus, Anthony; Fabiani, Brianna; Gharb, Bahar Bassiri; Zins, James E

2017-12-13

While prevalent in everyday life, smartphones are also finding increasing use as a medical care adjunct. The use of smartphone technology as a postoperative cosmetic surgery adjunct for care has received little attention in the literature. The purpose of this effort was to assess the potential efficacy of a smartphone-based cosmetic surgery early postoperative follow-up program. Specifically, could smartphone photography provided by the patient to the plastic surgeon in the first few days after surgery allay patient's concerns, improve the postoperative experience and, possibly, detect early complications? From August 2015 to March 2016 a smartphone-based postoperative protocol was established for patients undergoing cosmetic procedures. At the time of discharge, the plastic surgeon sent a text to the patient with instructions for the patient to forward a postoperative photograph of the operated area within 48 to 72 hours. The plastic surgeon then made a return call/text that same day to review the patient's progress. A postoperative questionnaire evaluated the patients' postoperative experience and satisfaction with the program. A total of 57 patients were included in the study. Fifty-two patients responded to the survey. A total of 50 (96.2%) patients reported that the process improved the quality of their postoperative experience. The protocol allowed to detect early complications in 3 cases. The physician was able to address and treat the complications the following day prior to the scheduled clinic follow up. The smartphone can be effectively utilized by the surgeon to both enhance the patient's postoperative experience and alert the surgeon to early postoperative problems. 4. © 2017 The American Society for Aesthetic Plastic Surgery, Inc. Reprints and permission: journals.permissions@oup.com

Follow-up study of Evolution-drum chipper; Evolution-energiapuuhakkurin kaeyttoeselvitys

Energy Technology Data Exchange (ETDEWEB)

Lahti, P [Kotimaiset Energiat Ky, Kangashaekki (Finland); Vesisenaho, T [VTT Energy, Jyvaeskylae (Finland). Fuel Production

1997-12-01

The aim of this project was to test and further develop a new type of a drum chipper. It was assumed that this Evolution-chipper would be able to produce fuel chips without long splinters and would also be reliable and effective in chipping work at road-side landings. In this project the fuel chip quality and productivity of the chipper were found out. The follow-up study started in October 1995 and ended in the end of 1996. According to the follow-up study the mechanical availability of the chipper was 83 % during a period of one year. Because of the rather low level of fuel chip utilisation in Finland the work sites are located far from each other. Therefore the moving between working sites take as much as 1/5 of the total working hours. The chipper is easy to operate and the differences in the productivity between operators are modest. The chipping productivity varies mainly depending on the raw material. The average productivity was 45,8 m{sup 3} (loose) per gross effective hour during the follow-up period. The internal screening system of the chipper diminishes the amount of long splinters effectively. Other chipping parameters (such as rotating speed) affected the chip quality only a little. (orig.)

The Cornella Health Interview Survey Follow-Up (CHIS.FU Study: design, methods, and response rate

Directory of Open Access Journals (Sweden)

Perez Gloria

2003-03-01

Full Text Available Abstract Background The aim of this report is to describe the main characteristics of the design, including response rates, of the Cornella Health Interview Survey Follow-up Study. Methods The original cohort consisted of 2,500 subjects (1,263 women and 1,237 men interviewed as part of the 1994 Cornella Health Interview Study. A record linkage to update the address and vital status of the cohort members was carried out using, first a deterministic method, and secondly a probabilistic one, based on each subject's first name and surnames. Subsequently, we attempted to locate the cohort members to conduct the phone follow-up interviews. A pilot study was carried out to test the overall feasibility and to modify some procedures before the field work began. Results After record linkage, 2,468 (98.7% subjects were successfully traced. Of these, 91 (3.6% were deceased, 259 (10.3% had moved to other towns, and 50 (2.0% had neither renewed their last municipal census documents nor declared having moved. After using different strategies to track and to retain cohort members, we traced 92% of the CHIS participants. From them, 1,605 subjects answered the follow-up questionnaire. Conclusion The computerized record linkage maximized the success of the follow-up that was carried out 7 years after the baseline interview. The pilot study was useful to increase the efficiency in tracing and interviewing the respondents.

Medical radiation workers and the risk of cancer: A retrospective follow-up study

Energy Technology Data Exchange (ETDEWEB)

Ko, Seul Ki; Cha, Eun Shil; Lee, Won Jin [Dept. of Preventive Medicine, Korea University College of Medicine, Seoul (Korea, Republic of)

2017-04-15

Medical radiation workers are important population to study of chronic low dose radiation exposure and the numbers are continuously increasing worldwide. We have launched a retrospective cohort for medical radiation workers to investigate their health status and to assess the association with occupational radiation exposure. In this first analysis of cancer incidence using data from national dose registry, a number of significant findings at specific cancer sites were observed. Further investigation is needed to assess the association with observed cancer risk and occupational radiation exposure. In this first analysis of cancer incidence using data from national dose registry, a number of significant findings at specific cancer sites were observed.

A 5-Year follow-up of internet-based cognitive behavior therapy for social anxiety disorder.

Science.gov (United States)

Hedman, Erik; Furmark, Tomas; Carlbring, Per; Ljótsson, Brjánn; Rück, Christian; Lindefors, Nils; Andersson, Gerhard

2011-06-15

Internet-based cognitive behavior therapy (CBT) has been shown to be a promising method to disseminate cognitive behavior therapy for social anxiety disorder (SAD). Several trials have demonstrated that Internet-based CBT can be effective for SAD in the shorter term. However, the long-term effects of Internet-based CBT for SAD are less well known. Our objective was to investigate the effect of Internet-based CBT for SAD 5 years after completed treatment. We conducted a 5-year follow-up study of 80 persons with SAD who had undergone Internet-based CBT. The assessment comprised a diagnostic interview and self-report questionnaires. The main outcome measure was the Liebowitz Social Anxiety Scale-Self-Report (LSAS-SR). Additional measures of social anxiety were the Social Interaction Anxiety Scale (SIAS) and the Social Phobia Scale (SPS). Attrition rates were low: 89% (71/80) of the participants completed the diagnostic interview and 80% (64/80) responded to the questionnaires. Mixed-effect models analysis showed a significant effect of time on the three social anxiety measures, LSAS-SR, SIAS, and SPS (F(3,98-102) = 16.05 - 29.20, P < .001) indicating improvement. From baseline to 5-year follow-up, participants' mean scores on the LSAS-SR were reduced from 71.3 (95% confidence interval [CI] 66.1-76.5) to 40.3 (95% CI 35.2 - 45.3). The effect sizes of the LSAS-SR were large (Cohen's d range 1.30 - 1.40, 95% CI 0.77 - 1.90). Improvements gained at the 1-year follow-up were sustained 5 years after completed treatment. Internet-based CBT for SAD is a treatment that can result in large and enduring effects. Clinicaltrials.gov NCT01145690; http://clinicaltrials.gov/ct2/show/NCT01145690 (Archived by WebCite at http://www.webcitation.org/5ygRxDLfK).

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.

Determination of the Oswestry Disability Index score equivalent to a "satisfactory symptom state" in patients undergoing surgery for degenerative disorders of the lumbar spine-a Spine Tango registry-based study.

Science.gov (United States)

van Hooff, Miranda L; Mannion, Anne F; Staub, Lukas P; Ostelo, Raymond W J G; Fairbank, Jeremy C T

2016-10-01

The achievement of a given change score on a valid outcome instrument is commonly used to indicate whether a clinically relevant change has occurred after spine surgery. However, the achievement of such a change score can be dependent on baseline values and does not necessarily indicate whether the patient is satisfied with the current state. The achievement of an absolute score equivalent to a patient acceptable symptom state (PASS) may be a more stringent measure to indicate treatment success. This study aimed to estimate the score on the Oswestry Disability Index (ODI, version 2.1a; 0-100) corresponding to a PASS in patients who had undergone surgery for degenerative disorders of the lumbar spine. This is a cross-sectional study of diagnostic accuracy using follow-up data from an international spine surgery registry. The sample includes 1,288 patients with degenerative lumbar spine disorders who had undergone elective spine surgery, registered in the EUROSPINE Spine Tango Spine Surgery Registry. The main outcome measure was the ODI (version 2.1a). Surgical data and data from the ODI and Core Outcome Measures Index (COMI) were included to determine the ODI threshold equivalent to PASS at 1 year (±1.5 months; n=780) and 2 years (±2 months; n=508) postoperatively. The symptom-specific well-being item of the COMI was used as the external criterion in the receiver operating characteristic (ROC) analysis to determine the ODI threshold equivalent to PASS. Separate sensitivity analyses were performed based on the different definitions of an "acceptable state" and for subgroups of patients. JF is a copyright holder of the ODI. The ODI threshold for PASS was 22, irrespective of the time of follow-up (area under the curve [AUC]: 0.89 [sensitivity {Se}: 78.3%, specificity {Sp}: 82.1%] and AUC: 0.91 [Se: 80.7%, Sp: 85.6] for the 1- and 2-year follow-ups, respectively). Sensitivity analyses showed that the absolute ODI-22 threshold for the two follow-up time-points were

Congenital Anomalies Associated with Trisomy 18 or Trisomy 13 : A Registry-Based Study in 16 European Countries, 2000-2011

NARCIS (Netherlands)

Springett, Anna; Wellesley, Diana; Greenlees, Ruth; Loane, Maria; Addor, Marie-Claude; Arriola, Larraitz; Bergman, Jorieke; Cavero-Carbonell, Clara; Csaky-Szunyogh, Melinda; Draper, Elizabeth S.; Garne, Ester; Gatt, Miriam; Haeusler, Martin; Khoshnood, Babak; Klungsoyr, Kari; Lynch, Catherine; Dias, Carlos Matias; McDonnell, Robert; Nelen, Vera; O'Mahony, Mary; Pierini, Anna; Queisser-Luft, Annette; Rankin, Judith; Rissmann, Anke; Rounding, Catherine; Stoianova, Sylvia; Tuckerz, David; Zymak-Zakutnia, Natalya; Morris, Joan K.

2015-01-01

The aim of this study was to examine the prevalence of trisomies 18 and 13 in Europe and the prevalence of associated anomalies. Twenty-five population-based registries in 16 European countries provided data from 2000-2011. Cases included live births, fetal deaths (20+ weeks' gestation), and

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

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...

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.

CT-follow-up-studies in neurocysticercosis during praziquantel-therapy

Energy Technology Data Exchange (ETDEWEB)

Schwartz, A.; Aulich, A.; Hammer, B.

1987-05-01

Praziquanteltherapy has produced a much better prognosis in neurocysticercosis since 1980. The computertomographic findings and follow-up study in 4 patients with neurocysticercosis before and after praziquanteltherapy are described. The special difficulties of differential diagnosis and further diagnostic procedures are discussed in cases in which calcifications are absent and only solitary foci can be found.

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...

Factors relating to participation in follow-up to the 45 and up study in Aboriginal and non-Aboriginal individuals

Directory of Open Access Journals (Sweden)

Lina Gubhaju

2016-05-01

Full Text Available Abstract Background This study aimed to characterise the factors relating to participation in a postal follow-up study in Aboriginal and non-Aboriginal individuals, given the need to quantify potential biases from loss to follow-up and the lack of evidence regarding postal surveys among Aboriginal people. Methods The first 100,000 participants from the Sax Institute’s 45 and Up Study, a large scale cohort study, were posted a follow-up questionnaire gathering general demographic, health and risk factor data, emphasising Social, Economic and Environmental Factors (“The SEEF Study”. For each variable of interest, percentages of those invited who went on to participate in follow-up were tabulated separately for Aboriginal and non-Aboriginal participants and age- and sex-adjusted participation rate ratios (aPRR were calculated. Results Of the 692 Aboriginal and 97,178 non-Aboriginal invitees to the study, 314 Aboriginal (45 % and 59,175 non-Aboriginal (61 % individuals responded. While Aboriginal people were less likely to respond than non-Aboriginal people (aPRR 0.72, 95 % CI 0.66–0.78, factors related to response were similar. Follow-up study participants were more likely than non-participants to have university versus no educational qualifications (1.6, 1.3–2.0 [Aboriginal]; 1.5, 1.5–1.5 [non-Aboriginal] and an annual income of ≥70,000 versus < $20,000 (1.6, 1.3–2.0; 1.2, 1.2–1.3 [χ 2 = 7.7; p = 0.001]. Current smokers (0.55, 0.42–0.72; 0.76, 0.74–0.77 [χ 2 = 7.14; p = 0.03], those reporting poor self-rated health (0.68, 0.47–0.99; 0.65, 0.61–0.69, poor quality of life (0.63, 0.41–0.97; 0.61, 0.57–0.66 and very high psychological distress (0.71, 0.68–0.75 [non-Aboriginal] were less likely than other cohort members to respond. Conclusions Relatively large numbers of Aboriginal and non-Aboriginal individuals participated in the first 45 and Up Study follow-up suggesting that postal surveys

A 5-Year Follow-up Study on the Relationship between Obstructive Sleep Apnea and Parkinson Disease.

Science.gov (United States)

Sheu, Jau-Jiuan; Lee, Hsin-Chien; Lin, Herng-Ching; Kao, Li-Ting; Chung, Shiu-Dong

2015-12-15

Sleep disturbances are among the most common nonmotor symptoms of Parkinson disease. However, no large epidemiological data regarding the association between obstructive sleep apnea (OSA) and Parkinson disease have been reported. The goal of this study was to investigate the risk for Parkinson disease during a 5-y follow-up period after a diagnosis of OSA using a population-based dataset. The data for this retrospective longitudinal cohort study were retrieved from the Taiwan Longitudinal Health Insurance Database 2000. We identified 1,532 patients with OSA as the study cohort and randomly selected 7,660 patients as the comparison cohort. Each subject was individually followed up for a 5-y period to identify those in whom Parkinson disease subsequently developed. Stratified Cox proportional hazard regressions were performed as a means of comparing the 5-y risk of subsequent Parkinson disease between the study cohort and comparison cohort. Of the 9,192 total patients, Parkinson disease developed in 0.73% during the 5-y follow-up period: 1.24% and 0.63% in the OSA and control cohorts, respectively. After censoring patients who died during the follow-up period and adjusting for socio-demographic characteristics, the hazard ratio (HR) of Parkinson disease during the 5-y follow-up period for patients with OSA was 2.26 (95% confidence interval [CI] = 1.32-3.88) compared with comparison patients. In addition, among females, the adjusted HR of Parkinson disease was 3.54 (95% CI = 1.50-8.34) for patients with OSA compared to patients without OSA. However, among males, there was no significantly increased hazard of Parkinson disease for patients with OSA compared to those without OSA. Female patients with OSA were found to be at a significant risk of subsequent Parkinson disease during a 5-y follow-up period. © 2015 American Academy of Sleep Medicine.

Follow-up after rectal cancer

DEFF Research Database (Denmark)

Hovdenak Jakobsen, Ida; Juul, Therese; Bernstein, Inge

2017-01-01

BACKGROUND: The main treatment for non-metastatic rectal cancer (RC) is surgical resection. Late adverse effects that are highly prevalent and negatively impact patients' symptom burden and quality of life are: bowel-, urological and sexual dysfunctions; psychological distress; fear of recurrence....... As a consequence, the randomized controlled trial Follow-up after Rectal Cancer (FURCA) has been launched, testing the effect of a new patient-led, follow-up program. The aim of this paper is to describe the methodology used in the FURCA study and to report results from the development of the patient-led, follow......, or a control group following the current follow-up program with routine medicals. The primary outcomes are symptom burden and quality of life, measured by the Functional Assessment of Cancer Therapy - Colorectal (FACT-C) questionnaire. Other outcome and demographic data are collected as patient...

CT-follow-up-studies in neurocysticercosis during praziquantel-therapy

International Nuclear Information System (INIS)

Schwartz, A.; Aulich, A.; Hammer, B.

1987-01-01

Praziquanteltherapy has produced a much better prognosis in neurocysticercosis since 1980. The computertomographic findings and follow-up study in 4 patients with neurocysticercosis before and after praziquanteltherapy are described. The special difficulties of differential diagnosis and further diagnostic procedures are discussed in cases in which calcifications are absent and only solitary foci can be found. (orig.) [de

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.

Anatomical Features and Early Outcomes of Endovascular Repair of Abdominal Aortic Aneurysm from a Korean Multicenter Registry.

Science.gov (United States)

Kwon, Hyunwook; Lee, Do Yun; Choi, Soo Jin Na; Park, Ki Hyuk; Min, Seung-Kee; Chang, Jeong-Hwan; Huh, Seung; Jeon, Yong Sun; Won, Jehwan; Byun, Seung Jae; Park, Sang Jun; Jang, Lee Chan; Kwon, Tae-Won

2015-09-01

To introduce a nation-based endovascular aneurysm repair (EVAR) registry in South Korea and to analyze the anatomical features and early clinical outcomes of abdominal aortic aneurysms (AAA) in patients who underwent EVAR. The Korean EVAR registry (KER) was a template-based online registry developed and established in 2009. The KER recruited 389 patients who underwent EVAR from 13 medical centers in South Korea from January 2010 to June 2010. We retrospectively reviewed the anatomic features and 30-day clinical outcomes. Initial deployment without open conversion was achieved in all cases and procedure-related 30-day mortality rate was 1.9%. Anatomic features showed the following variables: proximal aortic neck angle 48.8±25.7° (mean±standard deviation), vertical neck length 35.0±17.2 mm, aneurysmal sac diameter 57.2±14.2 mm, common iliac artery (CIA) involvement in 218 (56.3%) patients, and median right CIA length 34.9 mm. Two hundred and nineteen (56.3%) patients showed neck calcification, 98 patients (25.2%) had neck thrombus, and the inferior mesenteric arteries of 91 patients (23.4%) were occluded. Anatomical features of AAA in patients from the KER were characterized as having angulated proximal neck, tortuous iliac artery, and a higher rate of CIA involvement. Long-term follow-up and ongoing studies are required.

Rectal neoplasms. Postoperative follow-up

International Nuclear Information System (INIS)

Galano Urgelles, Rolando; Rodriguez Fernandez, Zenen; Casaus Prieto, Arbelio

1997-01-01

A study of 31 patients operated on for rectal neoplasms between September, 1989 and September, 1995 in SantiAug de Cuba was performed. Patients Webre followed-up during this period for the purpose of the study. There was a frank predominance of males and ages between 45 and 64, of the stage II and the groups BI and BII according to Dukes' classification. Most patients received 5-fluoracil, without tumor relapses. The current survival rate of the series was 76 % at the end of the investigation. It is recommended that all patients operated on for this segment be followed-up after the operation; to continue with cytostatic treatment using 5-fluoracil, and to emphasize the importance of the use of tumor markers during the follow-up, in addition to transrectal ultrasound, as well as to make an early diagnosis through mass screening methods

Workplace bullying and common mental disorders: a follow-up study.

Science.gov (United States)

Lahelma, Eero; Lallukka, Tea; Laaksonen, Mikko; Saastamoinen, Peppiina; Rahkonen, Ossi

2012-06-01

Workplace bullying has been associated with mental health, but longitudinal studies confirming the association are lacking. This study examined the associations of workplace bullying with subsequent common mental disorders 5-7 years later, taking account of baseline common mental disorders and several covariates. Baseline questionnaire survey data were collected in 2000-2002 among municipal employees, aged 40-60 years (n=8960; 80% women; response rate 67%). Follow-up data were collected in 2007 (response rate 83%). The final data amounted to 6830 respondents. Workplace bullying was measured at baseline using an instructed question about being bullied currently, previously or never. Common mental disorders were measured at baseline and at follow-up using the 12-item version of the General Health Questionnaire. Those scoring 3-12 were classified as having common mental disorders. Covariates included bullying in childhood, occupational and employment position, work stress, obesity and limiting longstanding illness. Logistic regression analysis was used. After adjusting for age, being currently bullied at baseline was associated with common mental disorders at follow-up among women (OR 2.34, CI 1.81 to 3.02) and men (OR 3.64, CI 2.13 to 6.24). The association for the previously bullied was weaker. Adjusting for baseline common mental disorders, the association attenuated but remained. Adjusting for further covariates did not substantially alter the studied association. CONCLUSION The study confirms that workplace bullying is likely to contribute to subsequent common mental disorders. Measures against bullying are needed at workplaces to prevent mental disorders.

Biliary atresia: lessons learned from the voluntary German registry.

Science.gov (United States)

Leonhardt, J; Kuebler, J F; Leute, P J; Turowski, C; Becker, T; Pfister, E-D; Ure, B; Petersen, C

2011-03-01

Aim of the study was to carry out a 5-year survey of German patients with biliary atresia (BA) and to launch a discussion regarding the feasibility of voluntary registries in unregulated healthcare systems. A retrospective analysis of German BA patients born between 2001 and 2005, based on data collected from the voluntary European Biliary Atresia Registry (EBAR), was carried out and supplemented by data from all BA patients who underwent liver transplantation at the only 4 pediatric transplantation centers (pLTx) in Germany which are so far not registered at EBAR. Survival rates were calculated using Kaplan-Meier analysis and compared by Cox regression to determine the predictive value of age at surgery and the influence of the center size (fewer or more than 5 patients/study period) on overall survival and survival with native liver. A critical review of the 148 German EBAR charts revealed that 11 patients (7.4%) had no biliary atresia. The remaining 137 patients from EBAR together with 46 BA patients who underwent LTx without prior registration at EBAR were evaluated with a median follow-up of 39 months (range: 25-85 months). 29 hospitals performed a total of 159 Kasai procedures, but only 7 centers treated 5 or more patients (116 patients, range: 5-68), and 22 hospitals performed less than 5 KP (43 patients, range: 1-4). Primary LTx was performed in 21 patients (11.5%) and 3 patients died without surgical intervention. 16 patients were lost to follow-up (8.7%). Overall survival after 2 years was 83.3% (139 patients), including 105 patients (63%) who had undergone LTx and 34 patients (20.3%) with native liver. 28 patients died (16.7%), 8 after LTx (5.8%). The experience of the center was the only factor with a significant predictive value for jaundice-free survival with native liver (p=0.001). 25% of all German BA patients were not registered at EBAR, and 29 clinics were involved in the surgical management of BA patients. Therefore a new approach consisting of

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

Prognostic discrimination based on the EUTOS long-term survival score within the International Registry for Chronic Myeloid Leukemia in children and adolescents

DEFF Research Database (Denmark)

Millot, Frédéric; Guilhot, Joëlle; Suttorp, Meinolf

2017-01-01

The EUTOS Long-Term Survival score was tested in 350 children with chronic myeloid leukemia in first chronic phase treated with imatinib and registered in the International Registry for Childhood Chronic Myeloid Leukemia. With a median follow up of 3 years (range, 1 month to 6 years) progression ...

Prognostic discrimination based on the EUTOS long-term survival score within the International Registry for Chronic Myeloid Leukemia in children and adolescents

NARCIS (Netherlands)

Millot, Frederic; Guilhot, Joelle; Suttorp, Meinolf; Gunes, Adalet Meral; Sedlacek, Petr; De Bont, Eveline; Li, Chi Kong; Kalwak, Krzysztof; Lausen, Birgitte; Culic, Srdjana; Dworzak, Michael; Kaiserova, Emilia; De Moerloose, Barbara; Roula, Farah; Biondi, Andrea; Baruchel, Andre

2017-01-01

The EUTOS Long-Term Survival score was tested in 350 children with chronic myeloid leukemia in first chronic phase treated with imatinib and registered in the International Registry for Childhood Chronic Myeloid Leukemia. With a median follow up of 3 years (range, 1 month to 6 years) progression

Characteristics and follow-up of postmarketing studies of conditionally authorized medicines in the EU.

Science.gov (United States)

Hoekman, Jarno; Klamer, Thea T; Mantel-Teeuwisse, Aukje K; Leufkens, Hubert G M; De Bruin, Marie L

2016-07-01

The aim of the present study was to provide an insight into the characteristics and follow-up of postmarketing studies of medicines that were conditionally authorized in the European Union (EU). We compiled a list of all postmarketing studies attached as specific obligations to the licence of medicines that were granted conditional marketing authorization from January 2006 to April 2014. Studies were characterized based on their objective, design, status upon marketing authorization (MA) and due data set by authorities. They were linked to online study registrations (Clinicaltrials.gov, ENCePP) to determine completion date. We described and associated characteristics of studies and medicines, and determined whether studies were completed on time. A total of 59 postmarketing studies were requested for 21 conditionally authorized medicines. Most studies had an interventional study design (73%), were ongoing upon MA (61%) and aimed to provide additional data on efficacy (45%). Interventional studies were more often ongoing and providing efficacy data, while observational and other studies were more often new and providing safety data. Frequent grounds for requesting postmarketing studies were 'long-term follow-up' and 'increase data on subpopulations'. Of the 34 studies eligible for follow-up analysis, 26 (76%) were completed and 17 (50%) completed on time. Actual completion time took a median (interquartile range) of 274 (-121 to 556) days longer than expected. Our results indicated that most postmarketing studies attached to a conditional marketing authorization were eventually completed but that half were completed with a substantial delay. The observations suggest caution when broadening the use of postmarketing studies for resolving uncertainties about benefits and risks after MA. © 2016 The British Pharmacological Society.

Compliance with follow-up after cataract surgery in rural China.

Science.gov (United States)

Huang, Guofu; Crooms, Rita; Chen, Qianyun; Congdon, Nathan; He, Mingguang

2012-04-01

To evaluate reasons for non-compliance with post-cataract surgical follow-up in rural China, and assess the impact of incentives on improving compliance. Patients having undergone cataract surgery more than 3 months previously at cataract surgery training hospitals in Guangdong were invited by telephone and advertisements to a hospital-based study examination, with compensation for travel costs (US$7). Information on prior post-surgical follow up was collected by questionnaire at the hospital or by telephone. Logistic regression was used to assess predictors of post-operative attendance with or without compensation. Among 518 eligible patients, 426 (82.2%) underwent interviews and 342 (66.0%) attended the compensated study examination. Ninety nine participants (23.2%) reported previously returning for uncompensated follow-up ≥ 3 months post-operatively, and 225 (52.8%) had returned for any prior post-operative examination. Uncompensated follow-up at ≥ 3 months was associated with higher income (P = 0.037), and recalling instruction by a doctor to follow-up (P = 0.001), while age, gender, travel cost, and post-operative satisfaction and vision were not associated. Younger (P = 0.002) patients and those reporting being instructed to follow up (P = 0.008) were more likely to return for the compensated research examination. Among all interviewed subjects, only 170 (39.9%) reported knowing they were to return to hospital. Modest compensation, advertisements and telephone contact can increase medium-term follow-up rates after cataract surgery by three-fold. Better communication of specific targets for follow-up may improve follow-up compliance.

Verification of Parent-Report of Child Autism Spectrum Disorder Diagnosis to a Web-Based Autism Registry

Science.gov (United States)

Daniels, Amy M.; Rosenberg, Rebecca E.; Anderson, Connie; Law, J. Kiely; Marvin, Alison R.; Law, Paul A.

2012-01-01

Growing interest in autism spectrum disorder (ASD) research requires increasingly large samples to uncover epidemiologic trends; such a large dataset is available in a national, web-based autism registry, the Interactive Autism Network (IAN). The objective of this study was to verify parent-report of professional ASD diagnosis to the registry's…

Dual- vs. single-chamber defibrillators for primary prevention of sudden cardiac death: long-term follow-up of the Défibrillateur Automatique Implantable-Prévention Primaire registry.

Science.gov (United States)

Defaye, Pascal; Boveda, Serge; Klug, Didier; Beganton, Frankie; Piot, Olivier; Narayanan, Kumar; Périer, Marie-Cécile; Gras, Daniel; Fauchier, Laurent; Bordachar, Pierre; Algalarrondo, Vincent; Babuty, Dominique; Deharo, Jean-Claude; Leclercq, Christophe; Marijon, Eloi; Sadoul, Nicolas

2017-09-01

Implantable cardioverter defibrillators (ICDs) are an effective primary prevention of sudden cardiac death. We examined whether dual-chamber (DC) ICDs confer a greater benefit than single-chamber (SC) ICDs, and compared the long-term outcomes of recipients of each type of device implanted for primary prevention. Between 2002 and 2012, the DAI-PP registry consecutively enrolled 1258 SC- and 1280 DC-ICD recipients at 12 French medical centres. The devices were interrogated at 4- to 6-month intervals during outpatient visits, with a focus on the therapies delivered. The study endpoints were incidence of appropriate therapies, ICD-related morbidity, and deaths from all and from specific causes. The mean age of the SC- and DC-ICD recipients was 59 ± 12 and 62 ± 11 years, respectively (PDC- vs. 8.8% in the SC-ICD groups (P= 0.008). Over a mean follow-up of 3.1 ± 2.2 years, pulse generators were replaced in 21.9% of the DC- vs. 13.6% of the SC-ICD group (PDC-ICDs were associated with higher rates of peri-implant complications and generator replacements, whereas the survival and rates of inappropriate shocks were similar in both groups. NCT#01992458. Published on behalf of the European Society of Cardiology. All rights reserved. © The Author 2017. For permissions please email: journals.permissions@oup.com.

40 CFR 141.563 - What follow-up action is my system required to take based on continuous turbidity monitoring?

Science.gov (United States)

2010-07-01

... required to take based on continuous turbidity monitoring? 141.563 Section 141.563 Protection of... Individual Filter Turbidity Requirements § 141.563 What follow-up action is my system required to take based on continuous turbidity monitoring? Follow-up action is required according to the following tables...

Tuberculosis screening and follow-up of asylum seekers in Norway: a cohort study

Directory of Open Access Journals (Sweden)

Garåsen Helge

2009-05-01

Full Text Available Abstract Background About 80% of new tuberculosis cases in Norway occur among immigrants from high incidence countries. On arrival to the country all asylum seekers are screened with Mantoux test and chest x-ray aimed to identify cases of active tuberculosis and, in the case of latent tuberculosis, to offer follow-up or prophylactic treatment. We assessed a national programme for screening, treatment and follow-up of tuberculosis infection and disease in a cohort of asylum seekers. Methods Asylum seekers ≥ 18 years who arrived at the National Reception Centre from January 2005 to June 2006, were included as the total cohort. Those with a Mantoux test ≥ 6 mm or positive x-ray findings were included in a study group for follow-up. Data were collected from public health authorities in the municipality to where the asylum seekers had moved, and from hospital based internists in case they had been referred to specialist care. Individual subjects included in the study group were matched with the Norwegian National Tuberculosis Register which receive reports of everybody diagnosed with active tuberculosis, or who had started treatment for latent tuberculosis. Results The total cohort included 4643 adult asylum seekers and 97.5% had a valid Mantoux test. At least one inclusion criterion was fulfilled by 2237 persons. By end 2007 municipal public health authorities had assessed 758 (34% of them. Altogether 328 persons had been seen by an internist. Of 314 individuals with positive x-rays, 194 (62% had seen an internist, while 86 of 568 with Mantoux ≥ 15, but negative x-rays (16% were also seen by an internist. By December 31st 2006, 23 patients were diagnosed with tuberculosis (prevalence 1028/100 000 and another 11 were treated for latent infection. Conclusion The coverage of screening was satisfactory, but fewer subjects than could have been expected from the national guidelines were followed up in the community and referred to an internist. To

Patients with computed tomography-proven acute diverticulitis require follow-up to exclude colorectal cancer

Directory of Open Access Journals (Sweden)

Shafquat Zaman

2017-04-01

Full Text Available Background/Aims: Traditionally, patients with acute diverticulitis undergo follow-up endoscopy to exclude colorectal cancer (CRC. However, its usefulness has been debated in this era of high-resolution computed tomography (CT diagnosis. We assessed the frequency and outcome of endoscopic follow-up for patients with CT-proven acute diverticulitis, according to the confidence in the CT diagnosis.Methods: Records of patients with CT-proven acute diverticulitis between October 2007 and March 2014 at Sandwell & West Birmingham Hospitals NHS Trust were retrieved. The National Cancer Registry confirmed the cases of CRC. Endoscopy quality indicators were compared between these patients and other patients undergoing the same endoscopic examination over the same period.Results: We identified 235 patients with CT-proven acute diverticulitis, of which, 187 were managed conservatively. The CT report was confident of the diagnosis of acute diverticulitis in 75% cases. Five of the 235 patients were subsequently diagnosed with CRC (2.1%. Three cases of CRC were detected in the 187 patients managed conservatively (1.6%. Forty-eight percent of the conservatively managed patients underwent follow-up endoscopy; one case of CRC was identified. Endoscopies were often incomplete and caused more discomfort for patients with diverticulitis compared with controls.Conclusions: CRC was diagnosed in patients with CT-proven diverticulitis at a higher rate than in screened asymptomatic populations, necessitating follow-up. CT reports contained statements regarding diagnostic uncertainty in 25% cases, associated with an increased risk of CRC. Follow-up endoscopy in patients with CT-proven diverticulitis is associated with increased discomfort and high rates of incompletion. The use of other follow-up modalities should be considered.

EA follow-up in the Ghanaian mining sector: Challenges and opportunities

International Nuclear Information System (INIS)

Appiah-Opoku, Seth; Bryan, Hobson C.

2013-01-01

Environmental assessment (EA) follow-up provides a means for monitoring and evaluating the implementation of environmental impact studies. It is integral to the success or failure of a project or program. In spite of its importance, very little attention is given to the need for follow-up programs in most jurisdictions in Africa. Using a case study in the Ghanaian mining sector, this paper explores the challenges and opportunities within the country's EA process for an effective follow-up program. The paper is based on informal interviews, content analysis of relevant publications, official EA documents, and internet searches. The authors suggest a standard EA follow-up program to be formalized as an integral part of Ghana's environmental assessment policy. They also propose a follow-up process that harnesses existing opportunities within the country's EA system. This approach can be replicated in other African countries

Prevalence, prenatal diagnosis and clinical features of oculo-auriculo-vertebral spectrum: a registry-based study in Europe.

LENUS (Irish Health Repository)

Barisic, Ingeborg

2014-01-08

Oculo-auriculo-vertebral spectrum is a complex developmental disorder characterised mainly by anomalies of the ear, hemifacial microsomia, epibulbar dermoids and vertebral anomalies. The aetiology is largely unknown, and the epidemiological data are limited and inconsistent. We present the largest population-based epidemiological study to date, using data provided by the large network of congenital anomalies registries in Europe. The study population included infants diagnosed with oculo-auriculo-vertebral spectrum during the 1990-2009 period from 34 registries active in 16 European countries. Of the 355 infants diagnosed with oculo-auriculo-vertebral spectrum, there were 95.8% (340\\/355) live born, 0.8% (3\\/355) fetal deaths, 3.4% (12\\/355) terminations of pregnancy for fetal anomaly and 1.5% (5\\/340) neonatal deaths. In 18.9%, there was prenatal detection of anomaly\\/anomalies associated with oculo-auriculo-vertebral spectrum, 69.7% were diagnosed at birth, 3.9% in the first week of life and 6.1% within 1 year of life. Microtia (88.8%), hemifacial microsomia (49.0%) and ear tags (44.4%) were the most frequent anomalies, followed by atresia\\/stenosis of external auditory canal (25.1%), diverse vertebral (24.3%) and eye (24.3%) anomalies. There was a high rate (69.5%) of associated anomalies of other organs\\/systems. The most common were congenital heart defects present in 27.8% of patients. The prevalence of oculo-auriculo-vertebral spectrum, defined as microtia\\/ear anomalies and at least one major characteristic anomaly, was 3.8 per 100 000 births. Twinning, assisted reproductive techniques and maternal pre-pregnancy diabetes were confirmed as risk factors. The high rate of different associated anomalies points to the need of performing an early ultrasound screening in all infants born with this disorder.European Journal of Human Genetics advance online publication, 8 January 2014; doi:10.1038\\/ejhg.2013.287.

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.

Recurrence of panic disorder during pregnancy: a 7-year naturalistic follow-up study.

Science.gov (United States)

Dannon, Pinhas N; Iancu, Iulian; Lowengrub, Katherine; Grunhaus, Leon; Kotler, Moshe

2006-01-01

The aim of this naturalistic follow-up study was to examine the effect of pregnancy as a predicting factor of relapse in patients with panic disorder (PD). Eighty-five female patients with PD (between the ages of 20 and 35 years) were included in this study. They were divided into 2 groups based on whether the onset of PD had been during pregnancy (PD-pregnancy [PD-P]) or whether the onset of PD had been while not pregnant (PD-nonpregnant [PD-NP]). Patients were treated with paroxetine up to 40 mg/day for 12 months, and the full responders were tapered off their medication and were monitored for an additional 6 years. Treatment response was assessed using the Panic Self-Questionnaire (PSQ) with full response being defined as "0" panic attacks. Assessments using the PSQ were made at baseline and every 4 weeks for the first twelve months. During the 6-year drug-free follow-up period, patients were assessed using the PSQ every 3 months. Relapse was defined as the occurrence of a panic attack in any phase of the study. The effect of group membership (PD-P vs. PD-NP) and new pregnancies as risk factors for relapse were explored. Sixty-eight patients completed the 6-year follow-up, and each of the study groups (PD-P and PD-NP) was composed of 34 patients. Twenty-six of 34 (76.6%) patients in the PD-P group had another pregnancy, and 15/26 (57%) in this group experienced a relapse during the subsequent pregnancy. Three of 8 (37%) PD-P patients experienced a relapse without pregnancy. Among the second group (PD-NP), 18/34 (52.9%) became pregnant and 8/18 (44.4%) experienced a relapse at the time of pregnancy, whereas 4/16 (25%) experienced a relapse while not pregnant. Patients who relapsed during pregnancy had a more severe relapse (as defined by the severity of the PSQ score) compared with nonpregnant relapsers. Our naturalistic follow-up study demonstrated that pregnancy might confer an increased risk of relapse in PD. Moreover, when compared with patients who develop

A Follow-Up Study of the Deaf.

Science.gov (United States)

Reich, P. A.; Reich, C. M.

Followed up through interviews and questionnaires were 278 former students, average age 28 years, of two residential schools and one day school for the deaf in Ontario. Data was collected on the degree of hearing loss, use of a hearing aid, educational and occupational history, social integration, methods of communication, and attitudes toward…

Risk factors for cervical and trochanteric hip fractures in elderly women: a population-based 10-year follow-up study.

Science.gov (United States)

Jokinen, Heikki; Pulkkinen, Pasi; Korpelainen, Juha; Heikkinen, Jorma; Keinänen-Kiukaanniemi, Sirkka; Jämsä, Timo; Korpelainen, Raija

2010-07-01

We evaluated the contribution of lifestyle-related factors, calcaneal ultrasound, and radial bone mineral density (BMD) to cervical and trochanteric hip fractures in elderly women in a 10-year population-based cohort study. The study population consisted of 1,681 women (age range 70-73 years). Seventy-two percent (n = 1,222) of them participated in the baseline measurements. Calcaneal ultrasound was assessed with a quantitative ultrasound device. BMD measurements were performed at the distal and ultradistal radius by dual-energy X-ray absorptiometry. Forward stepwise logistic regression analysis was used to find the most predictive variables for hip fracture risk. During the follow-up, 53 of the women had hip fractures, including 32 cervical and 21 trochanteric ones. The fractured women were taller and thinner and had lower calcaneal ultrasound values than those without fractures. High body mass index (BMI) was a protective factor against any hip fractures, while low functional mobility was a risk factor of hip fractures. Specifically, high BMI protected against cervical hip fractures, while low physical activity was a significant predictor of these fractures. Similarly, high BMI protected against trochanteric fractures, whereas low functional mobility and high coffee consumption were significant predictors of trochanteric fractures. Cervical and trochanteric hip fractures seem to have different risk factors. Therefore, fracture type should be taken into account in clinical fracture risk assessment and preventative efforts, including patient counseling. However, the study is not conclusive due to the limited number of observed fractures during follow-up, and the results have to be confirmed in future studies.

Prevalent pain and pain level among torture survivors: a follow-up study

DEFF Research Database (Denmark)

Dorthe Reff, Olsen; Montgomery, Edith; Carlsson, J

2006-01-01

AIM: To estimate change over nine months and over two years, as concerns the prevalence and level of pain in the head, back and feet, among previously tortured refugees settled in Denmark, and to compare associations between torture methods and the prevalence of pain at baseline and at follow...... pattern was found when examining the level of pain as indicated by Visual Analogue Scales. Pain in the feet at follow-up was associated with previous exposure to beating against the feet. Pain in the back at baseline and pain in the head at follow-up were associated with suffocation. CONCLUSION: More than...... ten years after the torture took place, survivors of torture continue to suffer from pain associated with the type of torture they had been subjected to. This presents a considerable challenge to future evidence-based development of effective treatment programmes....

Tele consultation and tele follow up of thyroid cancer patients: A pilot study

International Nuclear Information System (INIS)

Pradhan, P.K.; Das, B.K.; Mohanty, B.N.; Mishra, S.K.

2005-01-01

Full text: Radioiodine therapy is an essential component of thyroid cancer management and these patients require life long follow up at timed interval. Though radioiodine therapy is a well established adjuvant treatment for well differentiated thyroid cancer, still the acceptance by the surgical colleagues and patients is not uniform. In addition, this facility is not available in the eastern part of the country. Therefore, such patients are required to travel more than 1500 K.M. to avail this treatment and subsequent follow up at our Institution. The existing telemedicine facility between SGPGIMS, Lucknow and SCB Medical College, Cuttack provided the opportunity to utilise the system for tele-consultation and tele follow up of thyroid cancer patients. The rationale of this ongoing study is to evaluate the suitability of telemedicine for tele consultation prior to radioiodine therapy and tele follow up following radioiodine therapy of patients with well differentiated thyroid cancer. Thirty patients (10 new cases and 20 follow up cases) were included in this study. New cases were studied on the basis of case history inputs by the operating surgeon and direct patient consultation to find out their suitability for high dose radioiodine therapy. At the same time pre-therapy instructions as well as details of admission were finalised. Follow up of patients (20 in number) were discussed and examined on live along with operating surgeon with respect to compliance of thyroxine suppression therapy, local recurrence and need for further high dose radioiodine therapy. Each time, at least one surgeon and nuclear physician were involved during live evaluation of patients which was done with VSAT, broad band of 256 Kbps band width provided by ISRO, Bangalore, India and case history, radiological and nuclear medicine images were already transmitted prior to live evaluation. All ten new cases were found to be suitable for high dose radioiodine therapy. The appointment dates for

The design, rationale, and baseline characteristics of a nationwide cohort registry in China: blood pressure and clinical outcome in TIA or ischemic stroke.

Science.gov (United States)

Xu, Jie; Liu, Yi; Tao, Yongli; Xie, Xuewei; Gu, Hongqiu; Pan, Yuesong; Zhao, Xingquan; Wang, Yongjun; Yan, Aoshuang; Wang, Yilong

2016-01-01

The relationship between poststroke blood pressure (BP) and clinical outcomes in ischemic stroke (IS) is still controversial. However, there is no large BP database for IS or transient ischemic attack (TIA) in China. This study aims to describe the rationale, study design, and baseline characteristics of a nationwide BP database in IS or TIA patients in China. The BOSS (blood pressure and clinical outcome in TIA or ischemic stroke) study was a hospital-based, prospective cohort study aiming to assess BP parameters and clinical outcome in IS/TIA patients. BP parameters were based on office BP, ambulatory BP, and home BP. Clinical outcomes included stroke recurrence, combined vascular events, and disability. Electronic case-report forms were used to record baseline and follow-up data. The patients were followed up for clinical outcomes at 3 months through face-to-face interview and at 12 months by telephone. Between October 2012 and February 2014, the BOSS registry recruited 2,608 patients from 61 hospitals, with a mean age of 62.5 years, 32.4% of whom were female, 88.9% with an entry diagnosis of IS, and 86% diagnosed with hypertension. The rates of patients lost-to-follow-up were 3.1% at 3 months and 5.1% at 1 year; 93% of patients completed ambulatory BP monitoring during hospitalization and 94.7% finished a 3-month BP diary. The BOSS registry will provide important evidence about BP management in the acute phase and secondary prevention for IS/TIA patients.

Protocol for a scoping review of post-trial extensions of randomised controlled trials using individually linked administrative and registry data.

Science.gov (United States)

Fitzpatrick, Tiffany; Perrier, Laure; Tricco, Andrea C; Straus, Sharon E; Jüni, Peter; Zwarenstein, Merrick; Lix, Lisa M; Smith, Mark; Rosella, Laura C; Henry, David A

2017-02-17

Well-conducted randomised controlled trials (RCTs) provide the least biased estimates of intervention effects. However, RCTs are costly and time-consuming to perform and long-term follow-up of participants may be hampered by lost contacts and financial constraints. Advances in computing and population-based registries have created new possibilities for increasing the value of RCTs by post-trial extension using linkage to routinely collected administrative/registry data in order to determine long-term interventional effects. There have been recent important examples, including 20+ years follow-up studies of trials of pravastatin and mammography. Despite the potential value of post-trial extension, there has been no systematic study of this literature. This scoping review aims to characterise published post-trial extension studies, assess their value, and identify any potential challenges associated with this approach. This review will use the recommended methods for scoping reviews. We will search MEDLINE, EMBASE and the Cochrane Central Register of Controlled Trials. A draft search strategy is included in this protocol. Review of titles and abstracts, full texts of potentially eligible studies and data/information extraction will be conducted independently by pairs of investigators. Eligible studies will be RCTs that investigated healthcare interventions that were extended by individual linkage to administrative/registry/electronic medical records data after the completion of the planned follow-up period. Information concerning the original trial, characteristics of the extension study, any clinical, policy or ethical implications and methodological or practical challenges will be collected using standardised forms. As this study uses secondary data, and does not include person-level data, ethics approval is not required. We aim to disseminate these findings through journals and conferences targeting triallists and researchers involved in health data linkage. We

An ontology-based annotation of cardiac implantable electronic devices to detect therapy changes in a national registry.

Science.gov (United States)

Rosier, Arnaud; Mabo, Philippe; Chauvin, Michel; Burgun, Anita

2015-05-01

The patient population benefitting from cardiac implantable electronic devices (CIEDs) is increasing. This study introduces a device annotation method that supports the consistent description of the functional attributes of cardiac devices and evaluates how this method can detect device changes from a CIED registry. We designed the Cardiac Device Ontology, an ontology of CIEDs and device functions. We annotated 146 cardiac devices with this ontology and used it to detect therapy changes with respect to atrioventricular pacing, cardiac resynchronization therapy, and defibrillation capability in a French national registry of patients with implants (STIDEFIX). We then analyzed a set of 6905 device replacements from the STIDEFIX registry. Ontology-based identification of therapy changes (upgraded, downgraded, or similar) was accurate (6905 cases) and performed better than straightforward analysis of the registry codes (F-measure 1.00 versus 0.75 to 0.97). This study demonstrates the feasibility and effectiveness of ontology-based functional annotation of devices in the cardiac domain. Such annotation allowed a better description and in-depth analysis of STIDEFIX. This method was useful for the automatic detection of therapy changes and may be reused for analyzing data from other device registries.

Clinical characteristics and consequences of hand eczema - an 8-year follow-up study of a population-based twin cohort

DEFF Research Database (Denmark)

Lerbaek, Anne; Kyvik, Kirsten Ohm; Ravn, Henrik

2008-01-01

affected. Mean hand eczema severity index score in individuals with clinical symptoms was 12.0. Sick leave was reported by 12.4%; job change by 8.5%. Being in the lowest socio-economic group and atopic dermatitis were risk factors for sick leave [odds ratio (OR) = 5.6; 95% confidence interval (95% CI) 1......BACKGROUND: Few population-based clinical follow-up studies on hand eczema are reported. Objectives: The aim of this study was to characterize clinical symptoms and to examine occupational and medical consequences as well as persistence of hand eczema in a population-based twin cohort. PATIENTS.......5-22.9 and OR = 2.9; 95% CI 1.0-8.1]. The majority (63.4%) had seen a doctor at least once, and atopic dermatitis was a risk factor for more than 1 visit (OR = 3.0; 95% CI 1.4-6.4). Duration of >10 years was a risk factor for persistence of symptoms, which was reported by 67.7%. CONCLUSIONS: The clinical picture...

[The Octabaix study. Baseline assessment and 5 years of follow-up].

Science.gov (United States)

Ferrer, Assumpta; Formiga, Francesc; Padrós, Gloria; Badia, Teresa; Almeda, Jesús; Octabaix, Grupo Estudio

This is a review of a prospective, community-based study with a follow-up period of 5years. It is a study of 328 participants aged 85 at baseline, of which 62% were female, 53% widows, and a third of them living alone. High blood pressure was observed in 75.9%, dyslipidaemia in 51.2%, and diabetes in 17.7%. At baseline the median Barthel Index was 95, the Spanish version of the Mini-Mental State Examination was 28, the Charlson index 1, the Mini Nutritional Assessment 25, the Gijón test 10, the visual analogue scale of the Quality of Life Test was 60, and with a mean of 6.1 prescription drugs. A lower quality of life was also associated with female gender, a phenotype of frailty, heart failure, and a high level of social risk. At 5years of follow-up, the mortality rate was high, with 138 (42.1%) of the population sample dying at the end of the period. It represents an annual mortality rate of 8.4%. Thus, a common denominator of this review has been the high importance of functionality and overall comorbidity factors associated with mortality in this very old age group, compared to other more traditional factors in younger populations. Several studies of frailty have also been assessed in this group, as well as falls, nutritional risk, diabetes and successful aging, including important aspects to better understand this population group. Copyright © 2016 SEGG. Publicado por Elsevier España, S.L.U. All rights reserved.

15-Year Follow-Up

OpenAIRE

Karjula, Salla; Morin-Papunen, Laure; Auvinen, Juha; Ruokonen, Aimo; Puukka, Katri; Franks, Stephen; Jarvelin, Marjo-Riitta; Tapanainen, Juha S.; Jokelainen, Jari; Miettunen, Jouko; Piltonen, Terhi T.

2017-01-01

Context: Polycystic ovary syndrome (PCOS) is associated with increased psychological distress, obesity and hyperandrogenism being suggested as key promoters. Objectives: To investigate the prevalence of anxiety/depression and their coexistence in women with PCOS/PCOS-related symptoms at ages 31 and 46. The roles of obesity, hyperandrogenism, and awareness of PCOS on psychological distress were also assessed. Design: Population-based follow-up. Setting: Northern Finland Birth Cohort 1966 with ...

Characteristics associated with intervention and follow-up attendance in a secondhand smoke exposure study for families of NICU infants.

Science.gov (United States)

Northrup, Thomas F; Green, Charles; Evans, Patricia W; Stotts, Angela L

2015-07-01

The neonatal intensive care unit (NICU) is an ideal setting to intervene with an under served population on secondhand smoke exposure (SHSe). Unfortunately, attrition may compromise outcomes. Baseline characteristics associated with intervention and follow-up attendance were investigated in mothers who participated in a novel SHSe prevention study designed for households with a smoker and a NICU-admitted infant. Intervention participants received two motivational, NICU-based counseling sessions; usual care participants received pamphlets. Home-based follow-up assessments occurred at 1, 3 and 6 months. Sociodemographic, smoking history, and psychosocial factors were analyzed. Mothers from households with greater numbers of cigarettes smoked and fewer children had higher odds of both intervention and follow-up attendance. Maternal smoking abstinence (lifetime), more adults in the home and higher perceived interpersonal support were also associated with higher odds of follow-up visit completion. Innovative strategies are needed to engage mothers in secondhand smoke interventions, especially mothers who smoke, have lower levels of social support and have greater childcare responsibilities.

Developing workshop module of realistic mathematics education: Follow-up workshop

Science.gov (United States)

Palupi, E. L. W.; Khabibah, S.

2018-01-01

Realistic Mathematics Education (RME) is a learning approach which fits the aim of the curriculum. The success of RME in teaching mathematics concepts, triggering students’ interest in mathematics and teaching high order thinking skills to the students will make teachers start to learn RME. Hence, RME workshop is often offered and done. This study applied development model proposed by Plomp. Based on the study by RME team, there are three kinds of RME workshop: start-up workshop, follow-up workshop, and quality boost. However, there is no standardized or validated module which is used in that workshops. This study aims to develop a module of RME follow-up workshop which is valid and can be used. Plopm’s developmental model includes materials analysis, design, realization, implementation, and evaluation. Based on the validation, the developed module is valid. While field test shows that the module can be used effectively.

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.

[Follow-up and treatment outcome of early anorexia nervosa].

Science.gov (United States)

Schulze, U; Neudörfl, A; Krill, A; Warnke, A; Remschmidt, H; Herpertz-Dahlmann, B

1997-03-01

In a two-center follow-up study on the early-onset form of anorexia nervosa, we reexamined 43 (74%) of 58 former patients who had developed anorexia nervosa at the age of 13 years or younger. In addition to make a standardized assessment of the eating disorder at follow-up we assessed psychiatric comorbidity with a structured interview based on the criteria of DSM-III-R and ICD-10. After an average follow-up period of 6.8 years, 8 (18%) of our former patients had an eating disorder not otherwise specified (EDNOS) and 4 (9%) still suffered from anorexia nervosa. 5 (11%) of the subjects had developed bulimia nervosa. In 3 cases (7%) we found both syndromes. 12 (28%) of our former patients had an additional psychiatric disorder. The results of our study indicate that the quality of outcome in patients with an early-onset form of anorexia nervosa does not differ from that in individuals with a later manifestation of the eating disorder. Factors of prognostic relevance were the existence of an eating disorder during the first year of life and the duration of the follow-up period.

Psoriasis and associated variables in classification and outcome of juvenile idiopathic arthritis - an eight-year follow-up study

DEFF Research Database (Denmark)

Ekelund, Maria; Aalto, Kristiina; Fasth, Anders

2017-01-01

BACKGROUND: To study the impact of psoriasis and features associated with psoriasis on classification and outcome in a population-based follow-up cohort of children with juvenile idiopathic arthritis (JIA). METHODS: In all, 440 children with JIA were followed for a median of 8 years...... in a prospective Nordic population-based cohort study. Data for remission was available for 427 of these children. The presence of psoriasis, psoriasis-like rash, dactylitis, nail pitting, enthesitis, tenosynovitis and heredity was assessed in relation to ILAR classification and remission. RESULTS: Clinical...... findings associated with psoriasis developed consecutively during the 8-year period. Six of 14 children with psoriasis were not classified as juvenile psoriatic arthritis according to the ILAR criteria at 8 year follow-up. Dactylitis was more common in children with early onset of JIA. After 8 years we...

Women's higher likelihood of disability pension: the role of health, family and work. A 5-7 years follow-up of the Hordaland Health Study.

Science.gov (United States)

Haukenes, Inger; Gjesdal, Sturla; Rortveit, Guri; Riise, Trond; Maeland, John Gunnar

2012-08-31

Women's higher risk of disability pension compared with men is found in countries with high female work participation and universal welfare schemes. The aim of the study was to examine the extent to which self-perceived health, family situation and work factors explain women's higher risk of disability pension. We also explored how these factors influenced the gender difference across educational strata. The population-based Hordaland Health Study (HUSK) was conducted in 1997-99 and included inhabitants born in 1953-57 in Hordaland County, Norway. The current study included 5,959 men and 6,306 women in paid work with valid information on education and self-perceived health. Follow-up data on disability pension, for a period of 5-7 years, was obtained by linking the health survey to a national registry of disability pension. Cox regression analyses were employed. During the follow-up period 99 (1.7%) men and 230 (3.6%) women were awarded disability pension, giving a twofold risk of disability pension for women compared with men. Except for a moderate impact of self-perceived health, adjustment for family situation and work factors did not influence the gender difference in risk. Repeating the analyses in strata of education, the gender difference in risk of disability pension among the highly educated was fully explained by self-perceived health and work factors. In the lower strata of education there remained a substantial unexplained gender difference in risk. In a Norwegian cohort of middle-aged men and women, self-perceived health, family situation and work factors could not explain women's higher likelihood of disability pension. However, analyses stratified by educational level indicate that mechanisms behind the gender gap in disability pension differ by educational levels. Recognizing the heterogeneity within gender may contribute to a deeper understanding of women's higher risk of disability pension.

Design characteristics of the Corrona Japan rheumatoid arthritis registry.

Science.gov (United States)

Yamanaka, Hisashi; Kishimoto, Mitsumasa; Pappas, Dimitrios A; Greenberg, Jeffrey D; Kremer, Joel M; Tanaka, Yoshiya

2018-01-01

The primary objective is to prospectively study the comparative safety and effectiveness of older and newer classes of nonbiologic DMARDs (Disease-modifying antirheumatic drugs), biologic DMARDs and targeted synthetic therapies approved for rheumatoid arthritis (RA) in a real-world patient population in Japan. Prospective, multicenter, noninterventional, observational study across geographic distribution of both private and public institutions for patients with RA who are newly prescribed one of the following medications: (1) methotrexate; (2) anti-TNF biologic DMARDs; (3) non-TNF biologic DMARDs; and (4) approved JAK inhibitors at the time of enrollment into the registry. Target enrollment is currently 2000 subjects. Baseline and follow-up data on patient demographics, medical history, disease activity, laboratory results, comorbidities, hospitalizations, and targeted safety events are obtained via Physician and Patient Questionnaires. Fifty sites are anticipated to participate with 40 sites ethics committee (EC) approved at the time of submission consisting of 23% clinics, 21% private academic hospitals, 29% private mid-sized to large hospitals, 15% national academic hospitals, and 12% national hospitals. The Corrona Japan RA Registry will provide real-world evidence from both private and public institutions on the comparative effectiveness and safety of recently approved RA therapies in Japan.

Socio-economic inequalities in the incidence of four common cancers: a population-based registry study.

Science.gov (United States)

Tweed, E J; Allardice, G M; McLoone, P; Morrison, D S

2018-01-01

To investigate the relationship between socio-economic circumstances and cancer incidence in Scotland in recent years. Population-based study using cancer registry data. Data on incident cases of colorectal, lung, female breast, and prostate cancer diagnosed between 2001 and 2012 were obtained from a population-based cancer registry covering a population of approximately 2.5 million people in the West of Scotland. Socio-economic circumstances were assessed based on postcode of residence at diagnosis, using the Scottish Index of Multiple Deprivation (SIMD). For each cancer, crude and age-standardised incidence rates were calculated by quintile of SIMD score, and the number of excess cases associated with socio-economic deprivation was estimated. 93,866 cases met inclusion criteria, comprising 21,114 colorectal, 31,761 lung, 23,757 female breast, and 15,314 prostate cancers. Between 2001 and 2006, there was no consistent association between socio-economic circumstances and colorectal cancer incidence, but 2006-2012 saw an emerging deprivation gradient in both sexes. The incidence rate ratio (IRR) for colorectal cancer between most deprived and least deprived increased from 1.03 (95% confidence interval [CI] 0.91-1.16) to 1.24 (95% CI 1.11-1.39) during the study period. The incidence of lung cancer showed the strongest relationship with socio-economic circumstances, with inequalities widening across the study period among women from IRR 2.66 (95% CI 2.33-3.05) to 2.91 (95% CI 2.54-3.33) in 2001-03 and 2010-12, respectively. Breast and prostate cancer showed an inverse relationship with socio-economic circumstances, with lower incidence among people living in more deprived areas. Significant socio-economic inequalities remain in cancer incidence in the West of Scotland, and in some cases are increasing. In particular, this study has identified an emerging, previously unreported, socio-economic gradient in colorectal cancer incidence among women as well as men. Actions

Postoperative follow-up studies in biliary atresia using radioisotope

Energy Technology Data Exchange (ETDEWEB)

Kanto, Kei; Ishida, Haruo; Hayashi, Akira; Kamagata, Shoichiro; Sanbonmatsu, Toru; Matsufuji, Hiroshi; Ishii, Katsumi

1988-09-01

With increasing numbers of long survival patients in biliary atresia, associated diseases such as liver cirrhosis and portal hypertension seem to be more important in their course. We use liver scintigraphy, hepatobiliary scintigraphy and transrectal portal scintigraphy as the follow-up study. Three studies generally correlate the present state of the patients, but there seems to be dissociation in the group of cirrhosis without icterus which are encountered most often in biliary atresia. That can be seen in hepatobiliary scintigraphy especially. So we emphasis that to choose several isotope studies are essential in determination of the postoperative state in biliary atresia.

Exploring "Successful" Outcomes of Entrepreneurship Education: A Follow-Up Study

Science.gov (United States)

Galloway, Laura; Kapasi, Isla; Whittam, Geoff

2015-01-01

During 2005-2006 entrepreneurship students in several UK universities completed a survey about their background and career intentions. This paper reports, eight years on, on a follow-up study with ten of these participants, with the aim of exploring the students' intentions and subsequent actions since graduating. Using a qualitative methodology,…

Health status and follow-up of liquidators in Russia

International Nuclear Information System (INIS)

Ivanov, V.

1996-01-01

In 1986 immediately after the Chernobyl accident the USSR Ministry of Health adopted the large-scale program on the establishing of All-Union Distributed Registry of persons affected by radiation at the Medical Radiological Research Center of RAMS, Obninsk. To 1992, to the time of dissolving of the USSR, the database of the Registry comprised medical and dosimetric information on 659 thousand of affected persons including 284 thousand of liquidators. At present time data on 435 thousand of affected persons, citizens of Russia, including 152 thousand of liquidators are kept in Russian National Medical and Dosimetric Registry. Officially registered average doses of external irradiation of liquidators are as follows: liquidators of 1986 -15,9 cGy; 1987 - 9,0 cGy; 1988 - 3,3 cGy; 1989 - 3,2 cGy. The prognosis of excess mortality from malignant tumors among liquidators in 20 years after the irradiation has been made with the account of age distribution of liquidators (average age of liquidators at the moment of their work within the 30-km zone was 33 years) and dosimetric data. Attributive risk of mortality from all malignant tumors could be 2,8%, from leukemia - 23,6%. The prognosis is in good agreement with the actual data on mortality from malignant tumors among liquidators gathered for the period from 1986 to 1995. We have stated that liquidators of 1986 and 1987 comprise the group of the especially high risk by the incidence and disability rates. These rates for the liquidators several times exceed average rates for the whole cohort. The number of essential studies among them cancer risks in liquidators have been performed within the framework of EEC Experimental Collaboration Project 7 'Epidemiological investigations including dose assessment and dose reconstruction'. The findings can be used as basis further long-term epidemiological studies on the assessment of radiation risks of leukemia among liquidators

Effectiveness of IMPACT:Ability to Improve Safety and Self-Advocacy Skills in Students With Disabilities-Follow-Up Study.

Science.gov (United States)

Dryden, Eileen M; Desmarais, Jeffrey; Arsenault, Lisa

2017-02-01

Research shows that individuals with disabilities are more likely to experience abuse than their peers without disabilities. Yet, few evidenced-based abuse prevention interventions exist. This study examines whether positive outcomes identified previously in an evaluation of IMPACT:Ability were maintained 1 year later. A survey measuring safety and self-advocacy knowledge, confidence, and behaviors among special education high-school students was administered 12 months post-training. Paired samples t-tests were used to compare baseline to follow up and postsurvey to follow up and repeated measures analyses were conducted to test the effect of time across the 3 time points (baseline, post, and 1-year follow up) (N = 47). Follow-up study participants had a range of disabilities, just over half were boys, and most were either black or Latino/Hispanic. Difference between scores at baseline and follow-up for all the measures of interest represented gains from baseline. Statistically significant post-training improvements in participants' safety and self-advocacy knowledge and confidence were maintained 1-year later. These results provide additional support for the case that IMPACT:Ability is a promising safety and self-advocacy training program for diverse groups of students with disabilities. © 2017, American School Health Association.

Studies of neurosonographic follow up images in intracranial cysts of neonat

International Nuclear Information System (INIS)

Oh, Ki Keun; Kim, Kyo Yun; Suh, Jung Ho; Lee, Chul

1988-01-01

Total 28 cases of intracranial cysts of high risk neonates were taken neurosonographic follow up study among 210 cases which has been done since April, 1986 through August, 1987. The results were as follows: 1. Intracranial cysts occurred in 28 cases among 210 high risk neonates taken on neurosonography. 2. There were no differences depending on sex of patients or the maturity of neonates. 3. 8 cases among 28 cases had intracranial cysts which were developed at previous hemorrhage sites and most cysts (6/8 cases) were developed on higher grade ICH, with which the higher grade of hemorrhage the much more enlarged and the more prolongation in cyst absorption. 4. 20 cases had developed cysts with no evidence of hemorrhage on initial neurosonography who had respiratory problem (4), sepsis (3), meningitis (1) and perinatal asphyxia (6) as other reports. 5. Subependymal area was the most common location of cysts (25/28 cases). 6. In following up the serial neurosonograms, the degree of resorption and remaining sequelae were different depending on the causes of size and location on cysts. Most of the smaller cysts less than 5mm were resolved in between 60-90 days. 7. The cysts resulted from initial ICH developed usually 7 days after, with findings of central echolucency, which followed by a thinner cyst wall. The smaller cysts resulted from non hemorrhagic origin and had the same progression in resolution. 8. In one case with perinatal asphyxia, the patient had similar ultrasonographic findings of brain edema initially which was followed by U/S manifestation of mixed echogenicity in the brain parenchyme with obliteration of gyrus and sulici in 1 week. Thereafter which was turned to multiple septated cystic leukoencephalomalacia in the 3 weeks follow up study

Studies of neurosonographic follow up images in intracranial cysts of neonat

Energy Technology Data Exchange (ETDEWEB)

Oh, Ki Keun; Kim, Kyo Yun; Suh, Jung Ho; Lee, Chul [College of Medicine, Yonsei University, Seoul (Korea, Republic of)

1988-02-15

Total 28 cases of intracranial cysts of high risk neonates were taken neurosonographic follow up study among 210 cases which has been done since April, 1986 through August, 1987. The results were as follows: 1. Intracranial cysts occurred in 28 cases among 210 high risk neonates taken on neurosonography. 2. There were no differences depending on sex of patients or the maturity of neonates. 3. 8 cases among 28 cases had intracranial cysts which were developed at previous hemorrhage sites and most cysts (6/8 cases) were developed on higher grade ICH, with which the higher grade of hemorrhage the much more enlarged and the more prolongation in cyst absorption. 4. 20 cases had developed cysts with no evidence of hemorrhage on initial neurosonography who had respiratory problem (4), sepsis (3), meningitis (1) and perinatal asphyxia (6) as other reports. 5. Subependymal area was the most common location of cysts (25/28 cases). 6. In following up the serial neurosonograms, the degree of resorption and remaining sequelae were different depending on the causes of size and location on cysts. Most of the smaller cysts less than 5mm were resolved in between 60-90 days. 7. The cysts resulted from initial ICH developed usually 7 days after, with findings of central echolucency, which followed by a thinner cyst wall. The smaller cysts resulted from non hemorrhagic origin and had the same progression in resolution. 8. In one case with perinatal asphyxia, the patient had similar ultrasonographic findings of brain edema initially which was followed by U/S manifestation of mixed echogenicity in the brain parenchyme with obliteration of gyrus and sulici in 1 week. Thereafter which was turned to multiple septated cystic leukoencephalomalacia in the 3 weeks follow up study.

Long-term adherence to follow-up after treatment of cervical intraepithelial neoplasia

DEFF Research Database (Denmark)

Barken, Sidsel S; Lynge, Elsebeth; Andersen, Erik S.

2013-01-01

OBJECTIVE: To measure adherence to annual follow-up among women treated for cervical intraepithelial neoplasia. DESIGN: Prospective, population-based, register study. SETTING: Denmark, 1996-2007. POPULATION: All women treated for cervical intraepithelial neoplasia with conization. METHODS: Treated...... was poor in Denmark. Our findings suggest that because of this poor adherence, recommendations for long-term annual follow-up after treatment of cervical intraepithelial neoplasia may not be highly effective. Shorter follow-up schedules using highly sensitive tests appear attractive....

A nationwide registry-based cohort study of incidence of tonsillectomy in Denmark, 1991-2012

DEFF Research Database (Denmark)

Juul, Marie Louise; Rasmussen, Eva Rye; Rasmussen, Stig Hebbelstrup Rye

2018-01-01

OBJECTIVE: To update tonsillectomy incidence rates in Denmark and identify whether the incidence rates vary between geographical areas in the country during the period 1991-2012. DESIGN: This was a retrospective nationwide cohort study using data from the comprehensive Danish patient registries. ...

Selection, follow-up, and analysis in the Atomic Bomb Casualty Commission Study

International Nuclear Information System (INIS)

Jablon, S.

1985-01-01

More is known about ionizing radiation as a cause of human cancer than about any other carcinogen. Most of this knowledge is derived from the studies conducted by the Atomic Bomb Casualty Commission and Radiation Effects Research Foundation on about 100,000 Japanese survivors of the atomic bombing in 1945. The importance of these studies is based on the large size of the exposed population and the fact that individual estimates of radiation dose were possible. These factors and the combined excellence of the centralized vital statistics reporting and population registration systems in Japan have made feasible the continuing longitudinal studies of cancer mortality by site in relation to radiation dose over a span of more than 30 years. Excellent voluntary cooperation by the survivors has enabled the continuation of a biennial physical examination program which has made possible the acquisition of blood for studies of radiation-induced chromosomal aberrations and mutations at the level of specific genes. Similarly, with the cooperation of local universities, hospitals, and physicians, tumor and tissue registries necessary for the study of cancer incidence have been developed. An autopsy pathology program has enabled study of the accuracy of cause of death certification

Brain shrinking in chronic alcoholism: CT follow-up study in 65 patients

Energy Technology Data Exchange (ETDEWEB)

Schroth, G.; Remmes, U.; Schupmann, A.

1985-04-01

CT follow-up studies were done in 65 alcoholics before an inpatient treatment and after a period with confirmed abstinence of 5 weeks duration. The scans were rated 'blind' by linear measurement of well defined distances. An improvement (Significant reduction of brain 'atrophy') was found in 33 patients (50.8%), 5 patients (7,7%) showed a trend towards progression of brain 'atrophy'. The possibility of recovery tends to be significantly greater in younger subjects. These findings and the results of recent MR follow-up studies are consistent with decreased free water during alcohol intoxication and an increase in brain water during alcohol withdrawal.

Maternal Risk Factors for Preterm Birth in Murmansk County, Russia: A Registry-Based Study.

Science.gov (United States)

Usynina, Anna A; Postoev, Vitaly A; Grjibovski, Andrej M; Krettek, Alexandra; Nieboer, Evert; Odland, Jon Øyvind; Anda, Erik Eik

2016-09-01

Globally, about 11% of all liveborn infants are preterm. To date, data on prevalence and risk factors of preterm birth (PTB) in Russia are limited. The aims of this study were to estimate the prevalence of PTB in Murmansk County, Northwestern Russia and to investigate associations between PTB and selected maternal factors using the Murmansk County Birth Registry. We conducted a registry-based study of 52 806 births (2006-2011). In total, 51 156 births were included in the prevalence analysis, of which 3546 were PTBs. Odds ratios with 95% confidence intervals of moderate-to-late PTB, very PTB and extremely PTB for a range of maternal characteristics were estimated using multinomial logistic regression, adjusting for potential confounders. The overall prevalence of PTB in Murmansk County was 6.9%. Unmarried status, prior PTBs, spontaneous and induced abortions were strongly associated with PTB at any gestational age. Maternal low educational level increased the risk of extremely and moderate-to-late PTB. Young (<18 years) or older (≥35 years) mothers, graduates of vocational schools, underweight, overweight/obese mothers, and smokers were at higher risk of moderate-to-late PTB. Secondary education, alcohol abuse, diabetes mellitus, or gestational diabetes were strongly associated with moderate-to-late and very PTB. The observed prevalence of PTB (6.9%) in Murmansk County, Russia was comparable with data on live PTB from European countries. Adverse prior pregnancy outcomes, maternal low educational level, unmarried status, alcohol abuse, and diabetes mellitus or gestational diabetes were the most common risk factors for PTB. © 2016 John Wiley & Sons Ltd.

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

OpenAIRE

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

2013-01-01

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. M...

Postoperative follow-up studies in congenital dilatation of the common bile duct using hepatobiliary scintigraphy

Energy Technology Data Exchange (ETDEWEB)

Hirobe, Seiichi; Ishida, Haruo; Hayashi, Akira; Kamagata, Shoichiro; Fuchimoto, Yasufumi; Mizuno, Dai; Yano, Tsunehiro [Tokyo Metropolitan Kiyose Children`s Hospital (Japan); Ishii, Katsumi

1995-03-01

Follow-up studies in congenital dilatation of the common bile duct were done in 20 cases ranging 3 to 20 years after operation. Operative cholangiography had shown dilatation of the intrahepatic bile ducts in 15 patients (75%), of these, 7 patients had cystic dilatation. Five cases of these 7 patients showed prolonged stasis of the nuclide in the cystic dilated intrahepatic bile ducts by {sup 99m}Tc-PMT hepatobiliary scintigraphy in the follow-up studies even at 10 years after operation. But none of 20 cases had complication such as intrahepatic lithiasis, cholangitis, and liver dysfunction. Hepatobiliary scintigraphy could provide moderate anatomic and excellent functional information which were useful for these follow-up studies and careful follow-up should be done in the case of cystic dilatation of the intrahepatic bile ducts. (author).

Incidence of ovarian cancer after hysterectomy: a nationwide controlled follow up.

Science.gov (United States)

Loft, A; Lidegaard, O; Tabor, A

1997-11-01

To estimate the risk of developing ovarian cancer after abdominal (total or subtotal) hysterectomy on benign indication. Prospective historical cohort study with 12.5 years of follow up. Denmark, nationwide. All Danish women (aged 0 to 99 years) having undergone hysterectomy with conservation of at least one ovary for a benign indication from 1977 to 1981 (n = 22,135). Follow up was conducted from 1977 to 1991. The reference group included all Danish women who had not undergone hysterectomy, age-standardised according to the hysterectomy group (n = 2,554,872). Registry data derived from the Danish National Register of Patients (diagnoses and operation codes) and the Civil Registration System (information about general population, including time of death). Incidence rate of ovarian cancer, lifetime risk of ovarian cancer, relative risk of ovarian cancer. Seventy-one women developed ovarian cancer on average 7.0 years after hysterectomy and 10,659 women in the reference group had ovarian cancer diagnosed after on average 6.4 years. The incidence rate of ovarian cancer was 0.27 per 1000 person-years in the group that had undergone hysterectomy and 0.34 per 1000 person-years in the general population (age-standardised). The extrapolated lifetime risk of developing ovarian cancer was 2.1% after hysterectomy and 2.7% in the general population (RR 0.78; 95% CI 0.60-0.96). The risk of ovarian cancer is lower among women who have undergone hysterectomy compared with those who have not. The protection seems to decrease with time.

Rationale, design, and profile of the Three-Prefecture Cohort in Japan: A 15-year follow-up

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Junya Sado

2017-04-01

Full Text Available Background: We reutilized the existing Three-Prefecture Cohort to evaluate the relationship between lifestyle factors and the incidence or mortality from non-communicable diseases. Methods: This study was a prospective population-based observation conducted from the 1980s to 2000 in three prefectures (Miyagi, Aichi, and Osaka in Japan. The study subjects were residents aged ≥40 years who received a questionnaire. The follow-up period was 15 years from the baseline survey in each study area. A self-administered questionnaire, which included items on participants' demographic factors and lifestyle characteristics, was administered. Vital status and date of death were collected from residence certificates by the local government, and cause of death was identified using vital statistics. Cancer incidence and the date of diagnosis were collected from local cancer registry data. Results: A total of 46,421 men and 54,189 women were eligible for our analysis. The person-years of follow-up for cancer incidence were 464,664 and 567,271 for men and women, respectively, and those for death were 527,940 and 648,601 for men and women, respectively. There were 8479 cancer incidences (5106 men and 3373 women and 20,240 total deaths (11,156 men and 9084 women. The stomach was the most common cancer incidence site for both men (25.6% and women (18.6%. The leading cause of death was cancer among men (35.0% and cardiovascular disease among women (41.0%. Conclusions: The Three-Prefecture Cohort Study enabled us to reveal the association of multiphasic lifestyle factors with cancer incidence and mortality. The study will also allow us to conduct a pooled analysis in combination with other large-scale cohorts.

A follow-up study of environmental and biologic determinants of fertility among 430 Danish first-pregnancy planners

DEFF Research Database (Denmark)

Bonde, J P; Hjollund, N H; Jensen, T K

1998-01-01

This paper presents design and methods of a follow-up study of fecundability (defined as the probability of conception during one menstrual cycle) in first-pregnancy planners. We recruited 430 couples by postal letter among 52,255 members of four trade unions. Couples without earlier reproductive......-18%). Among all conceptions the proportion of early embryonal loss was 17% (95% CI 12-22%). This study demonstrates the feasibility of a prospective study of fertility and that the established study base can provide useful information on environmental risk to subfertility.......This paper presents design and methods of a follow-up study of fecundability (defined as the probability of conception during one menstrual cycle) in first-pregnancy planners. We recruited 430 couples by postal letter among 52,255 members of four trade unions. Couples without earlier reproductive...

Evaluation of the use of decision-support software in carcino-embryonic antigen (CEA-based follow-up of patients with colorectal cancer

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Verberne Charlotte J

2012-03-01

Full Text Available Abstract Background The present paper is a first evaluation of the use of "CEAwatch", a clinical support software system for surgeons for the follow-up of colorectal cancer (CRC patients. This system gathers Carcino-Embryonic Antigen (CEA values and automatically returns a recommendation based on the latest values. Methods Consecutive patients receiving follow-up care for CRC fulfilling our in- and exclusion criteria were identified to participate in this study. From August 2008, when the software was introduced, patients were asked to undergo the software-supported follow-up. Safety of the follow-up, experiences of working with the software, and technical issues were analyzed. Results 245 patients were identified. The software-supported group contained 184 patients; the control group contained 61 patients. The software was safe in finding the same amount of recurrent disease with fewer outpatient visits, and revealed few technical problems. Clinicians experienced a decrease in follow-up workload of up to 50% with high adherence to the follow-up scheme. Conclusion CEAwatch is an efficient software tool helping clinicians working with large numbers of follow-up patients. The number of outpatient visits can safely be reduced, thus significantly decreasing workload for clinicians.

The predictive value of microalbuminuria in IDDM. A five-year follow-up study

DEFF Research Database (Denmark)

Almdal, T; Nörgaard, K; Feldt-Rasmussen, B

1994-01-01

OBJECTIVE: To investigate the predictive value of microalbuminuria and the annual increase of albumin excretion as risk factors for diabetic nephropathy. RESEARCH DESIGN AND METHODS: A 5-year follow-up of patients with microalbuminuria (urinary albumin excretion [UAE] = 30-299 mg/24 h) and matched...... patients with normoalbuminuria (UAE classification was based on one single 24-h urine collection. The annual increase in UAE was calculated by linear regression analysis of log-transformed UAE on time. This study was conducted at the outpatient clinic of the Steno Diabetes Center...

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

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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.

Pre-Vaccination Care-Seeking in Females Reporting Severe Adverse Reactions to HPV Vaccine. A Registry Based Case-Control Study.

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Kåre Mølbak

Full Text Available Since 2013 the number of suspected adverse reactions to the quadrivalent human papillomavirus (HPV vaccine reported to the Danish Medicines Agency (DMA has increased. Due to the resulting public concerns about vaccine safety, the coverage of HPV vaccinations in the childhood vaccination programme has declined. The aim of the present study was to determine health care-seeking prior to the first HPV vaccination among females who suspected adverse reactions to HPV vaccine.In this registry-based case-control study, we included as cases vaccinated females with reports to the DMA of suspected severe adverse reactions. We selected controls without reports of adverse reactions from the Danish vaccination registry and matched by year of vaccination, age of vaccination, and municipality, and obtained from the Danish National Patient Registry and The National Health Insurance Service Register the history of health care usage two years prior to the first vaccine. We analysed the data by logistic regression while adjusting for the matching variables.The study included 316 cases who received first HPV vaccine between 2006 and 2014. Age range of cases was 11 to 52 years, with a peak at 12 years, corresponding to the recommended age at vaccination, and another peak at 19 to 28 years, corresponding to a catch-up programme targeting young women. Compared with 163,910 controls, cases had increased care-seeking in the two years before receiving the first HPV vaccine. A multivariable model showed higher use of telephone/email consultations (OR 1.9; 95% CI 1.2-3.2, physiotherapy (OR 2.1; 95% CI 1.6-2.8 and psychologist/psychiatrist (OR 1.9; 95% CI 1.3-2.7. Cases were more likely to have a diagnosis in the ICD-10 chapters of diseases of the digestive system (OR 1.6; 95% CI 1.0-2.4, of the musculoskeletal system (OR 1.6; 95% CI 1.1-2.2, symptoms or signs not classified elsewhere (OR 1.8; 95% CI 1.3-2.5 as well as injuries (OR 1.5; 95% CI 1.2-1.9.Before receiving the

Epidemiology of acute decompensated heart failure in India : The AFAR study (Acute failure registry study

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Sandeep Seth

2015-01-01

Full Text Available Objectives: There is a paucity of data on acute decompensated heart failure (ADHF in Indian patients. We herein report the in-hospital and 6-month outcome of Indian patients admitted with ADHF. Methods: We prospectively enrolled consecutive patients with ADHF due to systolic dysfunction in the acute failure registry and followed them up for at least 6 months. We analyzed the data on death and hospitalization of the first 90 patients on death and hospitalization over 6-months. Results: A total of 90 patients were enrolled with a mean age of 53.5 ± 17. 7 years and the majority were male (63%. The mean left ventricular ejection fraction was 29.2± 11.9%. The in hospital mortality was 30.8%. Postdischarge 6-month major adverse event (re-hospitalization/mortality combined and mortality rates were 39.5% and 26.3%, respectively. Conclusions: These data from a single referral center provide insights into the current status of acute HF care in India. We report a higher in-hospital and follow-up mortality rates in ADHF patients who present at younger ages than reported in Western literature.

Increasing trends in childlessness in recent birth cohorts - a registry-based study of the total Danish male population born from 1945 to 1980

DEFF Research Database (Denmark)

Priskorn, L; Holmboe, Sarah; Jacobsen, R

2012-01-01

The fertility rate has recently declined in many parts of the World, including Europe. To a large extent, this change can be explained by the socio-economic development. However, increasing fertility problems and widespread occurrence of poor semen quality could in part explain the few births....... The objective of this registry based study was to investigate birth cohort related trends in fertility and childlessness among Danish men. The study population comprised all 1 616 677 men in Denmark born from 1945 to 1980 of whom 1 359 975 (84.1%) were native Danes. Data were obtained from Statistics Denmark...... and contained information from The National Danish Birth Registry and The Danish In Vitro Fertilization (IVF) Registry. For consecutive birth cohorts of native Danish men cumulative fertility rates at age 45 declined from 1.91 children per man in the 1945 birth cohort to 1.71 for men born in 1960...

The outcome of children with selective mutism following cognitive behavioral intervention: a follow-up study.

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Lang, Claudia; Nir, Ziv; Gothelf, Ayelet; Domachevsky, Shoshi; Ginton, Lee; Kushnir, Jonathan; Gothelf, Doron

2016-04-01

Selective mutism (SM) is a relatively rare childhood disorder and is underdiagnosed and undertreated. The purpose of the retrospective naturalistic study was to examine the long-term outcome of children with SM who were treated with specifically designed modular cognitive behavioral therapy (MCBT). Parents of 36 children who met diagnostic criteria of SM that received MCBT treatment were invited for a follow-up evaluation. Parents were interviewed using structured scales and completed questionnaires regarding the child, including the Selective Mutism Questionnaire (SMQ). Twenty-four subjects were identified and evaluated. Their mean age ± SD of onset of SM symptoms, beginning of treatment, and age at follow-up were 3.4 ± 1.4, 6.4 ± 3.1, and 9.3 ± 3.4 years, respectively. There was robust improvement from beginning of treatment to follow-up evaluation in SM, social anxiety disorder, and specific phobia symptoms. The recovery rate from SM was 84.2 %. SM-focused MCBT is feasible in children and possibly effective in inducing long-term reduction of SM and comorbid anxiety symptoms. • There are limited empirical data on selective mutism (SM) treatment outcome and specifically on cognitive-behavioral therapy, with the majority of studies being uncontrolled case reports of 1 to 2 cases each. • There is also limited data on the long-term outcome of children with SM following treatment. What is New: • Modular cognitive behavioral treatment is a feasible and possibly effective treatment for SM. Intervention at a younger age is more effective comparing to an older age. • Treatment for SM also decreases the rate of psychiatric comorbidities, including separation anxiety disorder and specific phobia.

Socializing Intellectual Talk: A Case Study of Instructor Follow-Up Statements in Classroom Discourse

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Parsons, Caroline S.

2017-01-01

By analyzing the audio recording and transcription of classroom discourse, this case study focused on the ways in which the instructor used follow-up statements to socialize students into intellectual talk. Four relevant categories of follow-up statements emerged: (a) revoicing, (b) contextualization, (c) parallel elaboration, and (d) assistive…

Establishment of Electronic Chart-based Stroke Registry System in a Medical System in Taiwan

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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.

Better survival after breast-conserving therapy compared to mastectomy when axillary node status is positive in early-stage breast cancer: a registry-based follow-up study of 6387 Norwegian women participating in screening, primarily operated between 1998 and 2009.

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Hartmann-Johnsen, Olaf Johan; Kåresen, Rolf; Schlichting, Ellen; Nygård, Jan F

2017-07-03

Recent registry studies on early-stage breast cancer have shown better survival rates when women underwent breast-conserving therapy (BCT) compared with mastectomy (MTX). The aim of this study is to investigate women participating in screening, in all four stages of early breast cancer (T1N0M0, T2N0M0, T1N1M0, and T2N1M0), as to whether there is a survival benefit when women undergo BCT compared to MTX. A cohort of 6387 women aged 50-69, with primary-operated breast cancer from January 1998 to December 2009, participating in screening and followed-up until the end of 2010. Life tables were calculated by stages (pT1N0M0, pT2N0M0, pT1N1M0, and pT2N1M0), surgery groups (BCT and MTX), and screening detection (first screening, later screening, or interval cancer). Cox regression was used to calculate hazard ratios (HR) between BCT and MTX in crude and adjusted analyses. In stage T1N1M0, women who underwent MTX had an HR of 2.91 (95% CI 1.30-6.48) for breast cancer death compared to women who underwent BCT, after adjusting for screening detection, years of diagnosis, age at diagnosis, histology, grade, and hormone receptor status. For all other TNM categories of early breast cancer, there was no difference in survival. 10-year breast cancer-specific survival (BCSS) in T1N0M0 was 98% for women undergoing BCT and 96% for women undergoing MTX. 10-year BCSS in T1N1M0 was 97% for women undergoing BCT and 89% for women undergoing MTX. For women participating in screening, there is a benefit of BCT over MTX in stage T1N1M0. No such effects were observed in the other early stages of breast cancer.

Marriage and outcomes of people with schizophrenia in rural China: 14-year follow-up study.

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Ran, Mao-Sheng; Wong, Yin-Ling Irene; Yang, Shu-Yan; Ho, Petula S Y; Mao, Wen-Jun; Li, Jie; Chan, Cecilia Lai-Wan

2017-04-01

The influence of marriage on the long-term outcomes of schizophrenia is largely unknown. This study was to examine the impact of marriage on the 14-year outcomes and identify the correlates of marriage among persons with schizophrenia in rural community. All study participants with schizophrenia (n=510) were identified in 1994 in an epidemiological investigation of 123,572 people aged 15years and older and followed up in 2004 and 2008 in Xinjin County, Chengdu, China. The Patients Follow-up Schedule (PFS) was used in 2004 and 2008. The rate of follow-up in 2008 was 95.9%. Unmarried individuals in 1994 had higher rates of homelessness and suicide, and lower rate of survival in 2004 and 2008 than those married. In 14-year follow-up, unmarried individuals were more likely to be male, to have higher level of psychiatric symptoms and lower rate of full remission of illness, and to report lower level of work functioning, as well as with fewer family members and caregiver, and lower family economic status. The predictors of being married in 2008 included being married in 1994, shorter duration of illness, being female, and lower level of education. Being married is predictive of more favorable 14-year outcomes of persons with schizophrenia in the rural community. Given that marriage can be instrumental for enhancing family-based support and caregiving, as well as improving the community tenure of persons with schizophrenia, it is important to develop programs to enhance opportunity for persons with schizophrenia to get and stay married. Copyright © 2016 Elsevier B.V. All rights reserved.

Psychosocial outcome following traumatic brain injury in adults: a long-term population-based follow-up

DEFF Research Database (Denmark)

Engberg, Aase Worså; Teasdale, T W

2004-01-01

PRIMARY OBJECTIVE: On a national basis to conduct a 5, 10 and 15 year follow-up study of representative samples of survivors after traumatic brain injury (TBI) and to identify factors of importance for long-term survival and life satisfaction after TBI occurring in 1982, 1987 or 1992. RESEARCH......, against up to 14% of cranial fracture patients. Significantly more cerebral lesion patients than cranial fracture patients found emotional control more difficult, as well as increased difficulties with memory and concentration, maintenance of leisure time interests and general life satisfaction....... In the long run, an important factor influencing survival among cerebral lesion patients seemed to be whether relations with family and friends could be maintained at the pre-injury level....

Evidence based medicine (EBM) and evidence based radiology (EBR) in the follow-up of the patients after surgery for lung and colon-rectal carcinoma

International Nuclear Information System (INIS)

Giovagnoni, Andrea; Ottaviani, Letizia; Mensa', Anna; Durastanti, Martina; Floriani, Irene; Cascinu, Stefano

2005-01-01

Purpose: a) To define the role of diagnostic imaging modalities in the follow-up of patients after surgery for solid cancer, using an Evidence Based Medicine (EBM) approach; b) to asses the possible discrepancies between the theoretical model and the clinical protocols currently used for the follow-up of treated patients; c) to compare the real costs of the radiological examinations performed in a group of cancer patients followed up after surgery and the theoretical costs that would have been incurred had the patients been followed up according to the theoretical (evidence-based) follow-up programme. Materials and methods: We searched traditional and secondary databases for research papers and guidelines by international scientific societies published in the last 10 years and concerning the clinical impact of follow-up programs in patients operated on for colorectal and lung carcinoma. The papers were selected based on level of evidence using the systematic review approach of EBM. In each paper selected, we considered the overall survival and disease-free survival, quality of life, side and toxic effects of therapy, cost and psychological aspects to formulate a judgement on the usefulness the radiological tests. Subsequently, the clinical and imaging follow-up of 40 patients who had undergone surgical resection for colorectal cancer (20 patients) and lung cancer (20 patients) between 1998 and 2004 were retrospectively reviewed, and the costs of the follow-up programs for the two groups, were analysed and compared with those of the theoretical evidence-based programmes. Results: Of the 41 papers selected after systematic review only nine datasets were considered for our final analysis. The majority of papers (7 out of 9) and all the guidelines published by International Scientific Societies agreed on the poor value of closed imaging in the follow-up of patients who have undergone surgery for colorectal and lung cancer. A significant difference was found between the

Creating the Action Model for High Risk Infant Follow Up Program in Iran.

Science.gov (United States)

Heidarzadeh, Mohammad; Jodiery, Behzad; Mirnia, Kayvan; Akrami, Forouzan; Hosseini, Mohammad Bagher; Heidarabadi, Seifollah; HabibeLahi, Abbas

2013-11-01

Intervention in early childhood development as one of the social determinants of health, is important for reducing social gap and inequity. In spite of increasingly developing intensive neonatal care wards and decreasing neonatal mortality rate, there is no follow up program in Iran. This study was carreid out to design high risk infants follow up care program with the practical aim of creating an model action for whole country, in 2012. This qualitative study has been done by the Neonatal Department of the Deputy of Public Health in cooperation with Pediatrics Health Research Center of Tabriz University of Medical Sciences, Iran. After study of international documents, consensus agreement about adapted program for Iran has been accomplished by focus group discussion and attended Delphi agreement technique. After compiling primary draft included evidence based guidelines and executive plan, 14 sessions including expert panels were hold to finalize the program. After finalizing the program, high risk infants follow up care service package has been designed in 3 chapters: Evidence based clinical guidelines; eighteen main clinical guidelines and thirteen subsidiaries clinical guidelines, executive plan; 6 general, 6 following up and 5 backup processes. Education program including general and especial courses for care givers and follow up team, and family education processes. We designed and finalized high risk infants follow up care service package. It seems to open a way to extend it to whole country.

Effective strategies for scaling up evidence-based practices in primary care: a systematic review.

Science.gov (United States)

Ben Charif, Ali; Zomahoun, Hervé Tchala Vignon; LeBlanc, Annie; Langlois, Léa; Wolfenden, Luke; Yoong, Sze Lin; Williams, Christopher M; Lépine, Roxanne; Légaré, France

2017-11-22

While an extensive array of existing evidence-based practices (EBPs) have the potential to improve patient outcomes, little is known about how to implement EBPs on a larger scale. Therefore, we sought to identify effective strategies for scaling up EBPs in primary care. We conducted a systematic review with the following inclusion criteria: (i) study design: randomized and non-randomized controlled trials, before-and-after (with/without control), and interrupted time series; (ii) participants: primary care-related units (e.g., clinical sites, patients); (iii) intervention: any strategy used to scale up an EBP; (iv) comparator: no restrictions; and (v) outcomes: no restrictions. We searched MEDLINE, Embase, PsycINFO, Web of Science, CINAHL, and the Cochrane Library from database inception to August 2016 and consulted clinical trial registries and gray literature. Two reviewers independently selected eligible studies, then extracted and analyzed data following the Cochrane methodology. We extracted components of scaling-up strategies and classified them into five categories: infrastructure, policy/regulation, financial, human resources-related, and patient involvement. We extracted scaling-up process outcomes, such as coverage, and provider/patient outcomes. We validated data extraction with study authors. We included 14 studies. They were published since 2003 and primarily conducted in low-/middle-income countries (n = 11). Most were funded by governmental organizations (n = 8). The clinical area most represented was infectious diseases (HIV, tuberculosis, and malaria, n = 8), followed by newborn/child care (n = 4), depression (n = 1), and preventing seniors' falls (n = 1). Study designs were mostly before-and-after (without control, n = 8). The most frequently targeted unit of scaling up was the clinical site (n = 11). The component of a scaling-up strategy most frequently mentioned was human resource-related (n = 12). All

Effective strategies for scaling up evidence-based practices in primary care: a systematic review

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Ali Ben Charif

2017-11-01

Full Text Available Abstract Background While an extensive array of existing evidence-based practices (EBPs have the potential to improve patient outcomes, little is known about how to implement EBPs on a larger scale. Therefore, we sought to identify effective strategies for scaling up EBPs in primary care. Methods We conducted a systematic review with the following inclusion criteria: (i study design: randomized and non-randomized controlled trials, before-and-after (with/without control, and interrupted time series; (ii participants: primary care-related units (e.g., clinical sites, patients; (iii intervention: any strategy used to scale up an EBP; (iv comparator: no restrictions; and (v outcomes: no restrictions. We searched MEDLINE, Embase, PsycINFO, Web of Science, CINAHL, and the Cochrane Library from database inception to August 2016 and consulted clinical trial registries and gray literature. Two reviewers independently selected eligible studies, then extracted and analyzed data following the Cochrane methodology. We extracted components of scaling-up strategies and classified them into five categories: infrastructure, policy/regulation, financial, human resources-related, and patient involvement. We extracted scaling-up process outcomes, such as coverage, and provider/patient outcomes. We validated data extraction with study authors. Results We included 14 studies. They were published since 2003 and primarily conducted in low-/middle-income countries (n = 11. Most were funded by governmental organizations (n = 8. The clinical area most represented was infectious diseases (HIV, tuberculosis, and malaria, n = 8, followed by newborn/child care (n = 4, depression (n = 1, and preventing seniors’ falls (n = 1. Study designs were mostly before-and-after (without control, n = 8. The most frequently targeted unit of scaling up was the clinical site (n = 11. The component of a scaling-up strategy most frequently mentioned was

A follow-up of transients. Stage 1

International Nuclear Information System (INIS)

Enekull, Aa.; Wallner, B.

1981-09-01

A follow-up of the transients of temperature and pressure in the primary pressurized system of a nuclear power plant has been completed for the Barsebaeck-1 reactor. The investigation consists of the following steps:- the collation of transients - drawing up load data based on transients-analyses of stress - recommendations for future programs. It was found that the lifetime of the system will exceed 40 years excluding some of the pipes for feed water. The appendices give a detailed description of the transients.(G.B.)

Changes in quality of life among Norwegian school children: a six-month follow-up study

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Larsson Bo

2009-02-01

Full Text Available Abstract Background A considerable gap exists in regard to longitudinal research on quality of life (QoL in community populations of children and adolescents. Changes and stability of QoL have been poorly examined, despite the fact that children and adolescents undergo profound developmental changes. The aims of the study were to investigate short-term changes in student QoL with regard to sex and age in a school-based sample. Methods A representative Norwegian sample of 1,821 school children, aged 8–16 years and their parents were tested at baseline and 6 months later, using the Inventory of Life Quality for Children and Adolescents (ILC and the Kinder Lebensqualität Fragebogen (KINDL. Student response rate at baseline was 71.2% and attrition over the follow-up period was 4.6%, and 1,336 parents (70% completed the follow-up. Change scores between baseline and follow-up evaluations were analysed by means of ANCOVA in regard to sex and age effects. Results Students in the 8th grade reported a decrease in QoL over the six-month follow-up period as compared to those in the 6th grade with regard to Family and School domains and total QoL on the KINDL. For emotional well-being a significant linear decrease in QoL across grades 6th to 10th was observed. However, student ratings on the Friends and Self-esteem domains did not change significantly by age. Girls reported a higher decrease in their QoL across all grades over the follow-up period than did boys in respect of Self-esteem on the KINDL, and an age-related decrease in total QoL between 6th and 8th grade on the ILC. Parent reports of changes in child QoL were nonsignificant on most of the domains. Conclusion The observed age and sex-related changes in school children's QoL across the six-month follow-up period should be considered in epidemiological as well as clinical research.

A Dutch Nationwide Bariatric Quality Registry: DATO.

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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.

Increased risk of ischemic stroke after hyperosmolar hyperglycemic state: a population-based follow-up study.

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Jen-Yu Wang

Full Text Available BACKGROUND: Although much attention has been focused on the association between chronic hyperglycemia and cerebrovascular diseases in type 2 diabetes mellitus (DM patients, there is no data regarding the risk of ischemic stroke after a hyperosmolar hyperglycemic state (HHS attack. The objective of this study was to investigate the risk of ischemic stroke in type 2 DM patients after an HHS attack. METHODS: From 2004 to 2008, this retrospective observational study was conducted on a large cohort of Taiwanese using Taiwan's National Health Insurance Research Database (NHIRD. We identified 19,031 type 2 DM patients who were discharged with a diagnosis of HHS and 521,229 type 2 DM patients without an HHS diagnosis. Using the propensity score generated from logistic regression models, conditional on baseline covariates, we matched 19,031 type 2 DM patients with an HHS diagnosis with the same number from the comparison cohort. The one-year cumulative rate for ischemic stroke was estimated using the Kaplan-Meier method. After adjusting covariates, Cox proportional hazard regression was used to compute the adjusted one-year rate of ischemic stroke. RESULTS: Of the patients sampled, 1,810 (9.5% of the type 2 DM patients with HHS and 996 (5.2% of the comparison cohort developed ischemic stroke during the one-year follow-up period. After adjusting for covariates, the adjusted HR for developing ischemic stroke during the one-year follow-up period was 1.8 (95% C.I., 1.67 to 1.95, P<0.001 for type 2 DM patients with HHS compared with those without HHS. CONCLUSION: Although DM is a well-recognized risk factor for atherosclerosis, type 2 DM patients that have suffered a HHS attacks are at an increased risk of developing ischemic stroke compared with those without HHS.

The Perinatal Adverse events and Special Trends in Cognitive Trajectory (PLASTICITY - pre-protocol for a prospective longitudinal follow-up cohort study [v1; ref status: indexed, http://f1000r.es/qe

Directory of Open Access Journals (Sweden)

Laura Hokkanen

2013-02-01

Full Text Available Prospective follow-up studies on long term effects of pre- and perinatal adverse conditions in adulthood are rare. We will continue to follow the prospective cohort of initially 1196 subjects with predefined at-delivery risk factors out of 22,359 consecutive deliveries during 1971-74 at a single maternity hospital. The risk cohort and 93 controls have been followed up with a comprehensive clinical program at 5, 9, and 16 years of age and by questionnaire at the age of 30 years. Major medical events known to affect the development and growth of the brain, or cognitive functions and personality have been documented. Here we present a pre-protocol for the project, which we will call PLASTICITY, whose aim is to follow consenting subjects and controls into mid-adulthood and beyond, and to explore how the neonatal risk factors modulate neurodevelopmental and neurodegenerative processes such as learning disabilities, ADHD, aging, early onset mild cognitive impairment and even dementia. Our first focus is on the neurological and cognitive outcomes at age 40 years, using detailed neurological, neuropsychological, neuroimaging, genetic, blood chemistry and registry based methods. Results will be expected to offer information on the risk of neurological, psychiatric, metabolic and other medical consequences as well as the need for health and social services at the brink of middle age, when new degenerative phenomena are known to emerge. The evaluation at age 40 years will serve as a baseline for later aging studies. We welcome all comments and suggestions, which we will apply in finalizing details and inviting collaboration.

Breast Cancer in Ghana: Demonstrating the Need for Population-Based Cancer Registries in Low- and Middle-Income Countries

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Abigail S. Thomas

2017-12-01

Full Text Available Purpose: Breast cancer, the most common cancer worldwide, is the leading cause of cancer mortality in Ghanaian women. Previous studies find Ghanaian women are diagnosed at a younger age and at more advanced stages (III and IV, and have tumors with characteristics similar to African American women. We sought to remedy gaps in knowledge about breast cancer survival in Ghana and its relation to demographic and biologic factors of the tumors at diagnosis to assist in cancer control and registration planning. Methods: Individuals with a breast cancer diagnosis who sought care at Komfo Anokye Teaching Hospital from 2009 to 2014 were identified via medical records. Follow-up telephone interviews were held to assess survival. Kaplan-Meier plots and Cox proportional hazards models assessed survival associated with clinical and demographic characteristics. Results: A total of 223 patients completed follow-up and were analyzed. The median survival was 3.8 years. Approximately 50% of patients were diagnosed with grade 3 tumors, which significantly increased the risk of recurrence or death (hazard ratio [HR] for grade 2 versus 1, 2.98; 95% CI, 1.26 to 7.02; HR grade 3 v 1, 2.56; 95% CI, 1.08 to 6.07; P = .04. No other variables were significantly associated with survival. Conclusion: Higher tumor grade was significantly associated with shorter survival, indicating impact of aggressive biology at diagnosis on higher risk of cancer spread and recurrence. Contrary to prevailing notions, telephone numbers were not reliable for follow-up. Collecting additional contact information will likely contribute to improvements in patient care and tracking. A region-wide population-based active registry is important to implement cancer control programs and improve survival in sub-Saharan Africa.

The Impact of Diagnosis on Job Retention: A Danish Registry-Based Cohort Study

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Rasmus Espersen

2015-01-01

Full Text Available Background. In 1998, Denmark introduced the flex job scheme to ensure employment of people with a permanent reduced work capacity. This study investigated the association between select diagnoses and the risk of disability pension among persons eligible for the scheme. Methods. Using the national DREAM database we identified all persons eligible for the flex job scheme from 2001 to 2008. This information piece was linked to the hospital discharge registry. Selected participants were followed for 5 years. Results. From the 72,629 persons identified, our study included 329 patients with rheumatoid arthritis, 10,120 patients with spine disorders, 2179 patients with ischemic heart disease, and 1765 patients with functional disorders. A reduced risk of disability pension was found in the group with rheumatoid arthritis (hazard ratio = 0.69 (0.53–0.90 compared to the group with spine disorders. No differences were found when comparing ischemic heart disease and functional disorders. Employment during the first 3 months of the flex job scheme increased the degree of employment for all groups. Conclusion. Differences in the risk of disability pension were identified only in patients with rheumatoid arthritis. This study demonstrates the importance of obtaining employment immediately after allocation to the flex job scheme, regardless of diagnosis.

The Importance of Registries in the Postmarketing Surveillance of Surgical Meshes.

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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.

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.

High mortality among children with gastroschisis after the neonatal period: A long-term follow-up study.

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Risby, Kirsten; Husby, Steffen; Qvist, Niels; Jakobsen, Marianne S

2017-03-01

During the last decades neonatal outcomes for children born with gastroschisis have improved significantly. Survival rates >90% have been reported. Early prenatal diagnosis and increased survival enforce the need for valid data for long-term outcome in the pre- and postnatal counseling of parents with a child with gastroschisis. Long-term follow-up on all newborns with gastroschisis at Odense University Hospital (OUH) from January 1 1997-December 31 2009. Follow-up included neonatal chart review for neonatal background factors, including whether a GORE ® DUALMESH was used for staged closure, electronic questionnaires, interview and laboratory investigations. Cases were divided into complex and simple cases according to the definition by Molik et al. (2001). Survival status was determined by the national personal identification number registry. Because of the consistency of the registration, survival status was obtained from all children participating in the study. A total of 71 infants (7 complex and 64 simple) were included. Overall seven out of the 71 children (9.9%, median age: 52days (25-75% percentile 0-978days) had died at the time of follow-up. Three died during the neonatal period and four died after the neonatal period. Parenteral nutrition (PN) induced liver failure and suspected adhesive small bowel obstruction were the causes of deaths after the neonatal period. Overall mortality was high in the "complex" group compared to the simple group (3/7 (42.9%) vs 4/64 (6.3%), p = 0.04). Forty (62.5%) of the surviving children consented to participate in the follow-up. A total of 12 children had had suspected adhesive small bowel obstruction. Prevalence of small bowel obstruction was not related to the number of operations needed for neonatal closure of the defect. Staged closure was done in 5/12 (41.7%) who developed small bowel obstruction vs 11/35 (31.43%) without small bowel obstruction, p=0.518. A GORE ® DUALMESH was used in 16 children (22.5%). Of these

Conservative Treatment Protocol for Keratocystic Odontogenic Tumour: a Follow-up Study of 3 Cases

Directory of Open Access Journals (Sweden)

Gülsün Yildirim

2010-07-01

Full Text Available Background: The keratocystic odontogenic tumour is classified as a developmental cyst derived from the enamel organ or from the dental lamina. The treatment of keratocystic odontogenic tumour of the jaw remains controversial. The aim of this study was to report the outcome of our conservative treatment protocol for keratocystic odontogenic tumour.Methods: Three patients with different complaints referred to Oral and Maxillofacial Surgery Clinic, Faculty of Dentistry, Selçuk University. Initial biopsy was carried out in all patients and keratocystic odontogenic tumours was diagnosed subsequent to histopathological examination. The patients with keratocystic odontogenic tumours were treated by enucleation followed by open packing. This conservative treatment protocol was selected because of existing young aged patients. The average follow-up duration of the cases was 2 years.Results: Out of 3 cases, 2 lesions were present in mandible and 1 lesion in maxilla. There was no evidence of recurrence during follow-up. All the cases were monitored continuously with panoramic radiographs, computed tomography and clinical evaluations.Conclusions: This conservative treatment protocol for keratocystic odontogenic tumours, based on enucleation followed by open packing would be a possible choice with a view of offering low recurrence rate and low morbidity rate particularly in young patients.

Use of a cancer registry is preferable to a direct-to-community approach for recruitment to a cohort study of wellbeing in women newly diagnosed with invasive breast cancer

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Farrugia Helen

2008-05-01

Full Text Available Abstract Background Breast cancer (BC mortality is declining such that the number of survivors of BC in the community is increasing. BC survivors report a range of sequelae from their cancer and its management beyond the period of their immediate treatment. Previous studies to document these have generally been small, clinic-based or commenced years after diagnosis. We have recruited a large cohort of women newly diagnosed with invasive BC from the community who will be followed for five years in order to systematically document the physical, psychological and socio-economic consequences of BC and its treatment. The aim of this manuscript is to describe the issues encountered in the recruitment of this community-based study population. Methods Women residing in the southern Australian state of Victoria newly diagnosed with invasive BC were recruited to this cohort study using two approaches: directly from the community using an advertising campaign and contemporaneously using an invitation to participate from the Victorian Cancer Registry (VCR. Results Over the two and half year recruitment period, 2135 women were recruited and agreed to receive the enrollment questionnaire (EQ. Of these, 1684 women were eligible and completed an EQ, with the majority of participants having been recruited through the VCR (n = 1321. Only 16% of women contacted by the VCR actively refused participation following a letter of invitation and phone follow-up. The age distribution and tumour characteristics of participants are consistent with state-wide data and their residential postcodes include 400 of a possible 699. Recruitment through a direct community awareness program aimed at women with newly diagnosed invasive BC was difficult, labour-intensive and expensive. Barriers to the recruitment process were identified. Conclusion Most of the women in this study were recruited through a state-based cancer registry. Limitations to recruitment occurred because we

Hysteroscopic Essure Inserts for Permanent Contraception: Extended Follow-Up Results of a Phase III Multicenter International Study.

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Chudnoff, Scott G; Nichols, John E; Levie, Mark

2015-01-01

To describe safety, tolerability, and effectiveness results through 5 years of follow-up of a Phase III trial with Essure inserts. Multicenter, nonrandomized, single-arm international study (Canadian Task Force classification II-3). Thirteen clinical study centers in the United States, Europe, and Australia. A total of 518 previously fertile women seeking permanent contraception. The objective of the hysteroscopic sterilization procedure was bilateral Essure insert placement (ESS205 model) and tubal occlusion. Women with satisfactory device location and tube occlusion (based on modified hysterosalpingography [HSG]) were instructed to discontinue alternative contraception and to rely on Essure inserts for permanent contraception. The primary endpoint for the Phase III study was the rate of pregnancies occurring during the first year of relying (i.e., HSG-confirmed occlusion) on the Essure inserts for permanent contraception (i.e., 12 months after HSG). For the full 5 years of follow-up (5 years total of relying on the Essure inserts for contraception), the endpoints of interest were safety, prevention of pregnancy, and satisfaction. No pregnancies were reported among women relying on the Essure inserts who completed the full 5 years of follow-up. As of December 5, 2007, 449 women with successful bilateral placement relying on the Essure inserts contributed a total 24 942 woman-months of follow-up for assessing effectiveness. Overall, the Essure inserts were generally well tolerated, with participant comfort rated as "good" to "excellent" by 99% of women (382 of 385) after 5 years of use. Similarly, overall satisfaction was rated as "somewhat" to "very satisfied" by 98% of women (376 of 384) after 5 years of use. The majority of adverse events reported during the 5 years of follow-up were rated as either "mild" or "moderate" in severity. Three severe events (abdominal pain with very heavy periods and irregular menstrual bleeding) were reported in 2 subjects during

Disparities in abnormal mammogram follow-up time for Asian women compared to non-Hispanic Whites and between Asian ethnic groups

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Nguyen, KH; Pasick, RJ; Stewart, SL; Kerlikowske, K; Karliner, LS

2017-01-01

Background Delays in abnormal mammogram follow-up contribute to poor outcomes. We examined abnormal screening mammogram follow-up differences for non-Hispanic Whites (NHW) and Asian women. Methods Prospective cohort of NHW and Asian women with a Breast Imaging Reporting and Data System abnormal result of 0 or 3+ in the San Francisco Mammography Registry between 2000–2010. We performed Kaplan-Meier estimation for median-days to follow-up with a diagnostic radiologic test, and compared proportion with follow-up at 30, 60 and 90 days, and no follow-up at one-year for Asians overall (and Asian ethnic groups) and NHWs. We additionally assessed the relationship between race/ethnicity and time-to-follow-up with adjusted Cox proportional hazards models. Results Among Asian women, Vietnamese and Filipinas had the longest, and Japanese the shortest, median follow-up time (32, 28, 19 days, respectively) compared to NHWs (15 days). The proportion of women receiving follow-up at 30 days was lower for Asians vs NHWs (57% vs 77%, pAsian ethnic groups except Japanese. Asians had a reduced hazard of follow-up compared with NHWs (aHR 0.70, 95% CI 0.69–0.72). Asians also had a higher rate than NHWs of no follow-up (15% vs 10%; pAsian ethnic groups, Filipinas had the highest percentage of women with no follow-up (18.1%). Conclusion Asian, particularly Filipina and Vietnamese, women were less likely than NHWs to receive timely follow-up after an abnormal screening mammogram. Research should disaggregate Asian ethnicity to better understand and address barriers to effective cancer prevention. PMID:28603859

Danish Registry of Childhood and Adolescent Diabetes

DEFF Research Database (Denmark)

Svensson, Jannet; Cerqueira, Charlotte; Kjærsgaard, Per

2016-01-01

children diagnosed with diabetes before the age of 15 years since 1996. Since 2015, every child followed up at a pediatric center (years of age) will be included. MAIN VARIABLES: The variables in the registry are the quality indicators, demographic variables, associated conditions, diabetes......, 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 years of age were diagnosed in 2014). The disease management has...... 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...

Disparities in abnormal mammogram follow-up time for Asian women compared with non-Hispanic white women and between Asian ethnic groups.

Science.gov (United States)

Nguyen, Kim H; Pasick, Rena J; Stewart, Susan L; Kerlikowske, Karla; Karliner, Leah S

2017-09-15

Delays in abnormal mammogram follow-up contribute to poor outcomes. In the current study, the authors examined differences in abnormal screening mammogram follow-up between non-Hispanic white (NHW) and Asian women. The authors used a prospective cohort of NHW and Asian women with a Breast Imaging, Reporting and Data System (BI-RADS) abnormal result of category 0 or 3-plus in the San Francisco Mammography Registry between 2000 and 2010. Kaplan-Meier estimation for the median number of days to follow-up with a diagnostic radiologic test was performed, and the authors compared the percentage of women with follow-up at 30 days, 60 days, and 90 days and no follow-up at 1 year for Asian women overall (and Asian ethnic groups) and NHW women. In addition, the authors assessed the relationship between race/ethnicity and time to follow-up with adjusted Cox proportional hazards models. Among Asian women, Vietnamese and Filipina women had the longest, and Japanese women the shortest, median follow-up (32 days, 28 days, and 19 days, respectively) compared with NHW women (15 days). The percentage of women receiving follow-up at 30 days was lower for Asians versus NHWs (57% vs 77%; PAsian ethnic groups except Japanese. Asian women had a reduced hazard of follow-up compared with NHW women (adjusted hazard ratio, 0.70; 95% confidence interval, 0.69-0.72). Asian women also had a higher rate of receiving no follow-up compared with NHW women (15% vs 10%; PAsian ethnic groups, Filipinas were found to have the highest percentage of women with no follow-up (18.1%). Asian women, particularly Filipina and Vietnamese women, were less likely than NHW women to receive timely follow-up after an abnormal screening mammogram. Research should disaggregate Asian ethnicity to better understand and address barriers to effective cancer prevention. Cancer 2017;123:3468-75. © 2017 American Cancer Society. © 2017 American Cancer Society.

Cold pressor test myocardial perfusion SPECT as a predictor of the development of ischemia at exercise in the follow up of asymptomatic patients with moderate cardiovascular risk

International Nuclear Information System (INIS)

Traverso, Sonia S.; Redruello, Marcela F.; Grynberg, Laura E.; Cragnolino, Daniel E.; Maciel, Neiva R.; Masoli, Osvaldo H.; Perez Balino, Nestor A.; Meretta, Alejandro

2007-01-01

Introduction: Previous studies have published the correlation between myocardial perfusion SPECT (MP) during cold pressor test (CPT) and intracoronary acetylcholine and its usefulness as independent marker of endothelial dysfunction (ED). Objective: To analyze the incidence of positivization of MP exercise studies in the follow up of asymptomatic patients with moderate cardiovascular risk (CV) and ED detected by PF. Material and Methods: Of 301 patients of the PARADIGMA Registry (normal exercise MP SPECT and clinical probability [es

A follow-up study of patients with DSM-IV schizophreniform disorder.

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Iancu, Iulian; Dannon, Pinhas N; Ziv, Reuven; Lepkifker, Elie

2002-02-01

Schizophreniform disorder (SFD) has an unclear diagnostic and prognostic status within the psychotic spectrum. We studied 36 inpatients admitted to our ward between 1983 and 1993 due to SFD. The patients were contacted an average of 12 years after index hospitalization, and we noted the course of their illness, as well as their present diagnosis. Of the sample, 84% had additional, mostly psychotic, episodes during the follow-up, and 70% had diagnoses in the schizophrenic spectrum (that is, schizophrenia and schizoaffective disorder). A survival analysis revealed that confusion and the presence of at least 2 good prognostic factors (GPF) at index hospitalization predicted better outcome. SFD seems to be an early manifestation of schizophrenia. Only a few of those sampled did not experience additional relapses--a pessimistic finding at 12-year follow-up. The findings of this study accord with DSM-IV criteria and the literature regarding the long-term prognosis of SFD and the importance of the GPF.

Development of patient-based questionnaire about aesthetic and functional differences between overdentures implant-supported and overdentures tooth-supported. Study of 43 patients with a follow up of 1 year

OpenAIRE

GARGARI, M.; PRETE, V.; PUJIA, M.; CERUSO, F. M.

2013-01-01

Development of patient-based questionnaire about aesthetic and functional differences between overdentures implant-supported and overdentures tooth-supported. Study of 43 patients with a follow up of 1 year.

Travelers' health problems and behavior: prospective study with post-travel follow-up.

Science.gov (United States)

Vilkman, Katri; Pakkanen, Sari H; Lääveri, Tinja; Siikamäki, Heli; Kantele, Anu

2016-07-13

The annual number of international tourist arrivals has recently exceeded one billion, yet surprisingly few studies have characterized travelers' behavior, illness, and risk factors in a prospective setting. Particularly scarce are surveys of data spanning travel, return, and follow-up of the same cohort. This study examines behavior and illness among travelers while abroad, after return home, and at follow-up. Patterns of behavior connected to type of travel and illness are characterized so as to identify risk factors and provide background data for pre-travel advice. Volunteers to this prospective cohort study were recruited at visits to a travel clinic prior to departure. Data on the subjects' health and behavior were collected by questionnaires before and after journeys and over a three-week follow-up. In addition, the subjects were asked to fill in health diaries while traveling. The final study population consisted of 460 subjects, 79 % of whom reported illness during travel or on arrival: 69 % had travelers' diarrhea (TD), 17 % skin problems, 17 % fever, 12 % vomiting, 8 % respiratory tract infection, 4 % urinary tract infection, 2 % ear infection, 4 % gastrointestinal complaints other than TD or vomiting, and 4 % other symptoms. Of all subjects, 10 % consulted a doctor and 0.7 % were hospitalized; 18 % took antimicrobials, with TD as the most common indication (64 %). Ongoing symptoms were reported by 25 % of all travelers upon return home. During the three-week follow-up (return rate 51 %), 32 % of respondents developed new-onset symptoms, 20 % visited a doctor and 1.7 % were hospitalized. Factors predisposing to health problems were identified by multivariable analysis: certain regions (Southern Asia, South-Eastern Asia, and Eastern Africa), female gender, young age, and long travel duration. Despite proper preventive measures like vaccinations, malaria prophylaxis, and travel advice, the majority of our subjects fell ill during or

Chernobyl cleanup workers from Estonia: follow-up for cancer incidence and mortality

Science.gov (United States)

Rahu, Kaja; Auvinen, Anssi; Hakulinen, Timo; Tekkel, Mare; Inskip, Peter D; Bromet, Evelyn J; Boice, John D; Rahu, Mati

2013-01-01

This study examined cancer incidence (1986–2008) and mortality (1986–2011) among the Estonian Chernobyl cleanup workers in comparison with the Estonian male population. The cohort of 4,810 men was followed through nationwide population, mortality and cancer registries. Cancer and death risks were measured by standardized incidence ratio (SIR) and standardized mortality ratio (SMR), respectively. Poisson regression was used to analyze the effects of year of arrival, duration of stay, and time since return on cancer and death risks. The SIR for all cancers was 1.06 with 95% confidence interval 0.93–1.20 (232 cases). Elevated risks were found for cancers of pharynx, oesophagus, and the joint category of alcohol-related sites. No clear evidence of an increased risk of thyroid cancer, leukaemia, or radiation-related cancer sites combined was apparent. The SMR for all causes of death was 1.02 with 95% confidence interval 0.96–1.08 (1,018 deaths). Excess mortality was observed for mouth and pharynx cancer, alcohol-related cancer sites together, and suicide. Duration of stay rather than year of arrival was associated with increased mortality. Twenty-six years of follow-up of this cohort indicates no definite health effects attributable to radiation, but the elevated suicide risk has persisted. PMID:23532116

Chernobyl cleanup workers from Estonia: follow-up for cancer incidence and mortality

International Nuclear Information System (INIS)

Rahu, Kaja; Tekkel, Mare; Rahu, Mati; Auvinen, Anssi; Hakulinen, Timo; Inskip, Peter D; Bromet, Evelyn J; Boice Jr, John D

2013-01-01

This study examined cancer incidence (1986–2008) and mortality (1986–2011) among the Estonian Chernobyl cleanup workers in comparison with the Estonian male population. The cohort of 4810 men was followed through nationwide population, mortality and cancer registries. Cancer and death risks were measured by standardised incidence ratio (SIR) and standardised mortality ratio (SMR), respectively. Poisson regression was used to analyse the effects of year of arrival, duration of stay and time since return on cancer and death risks. The SIR for all cancers was 1.06 with 95% confidence interval 0.93–1.20 (232 cases). Elevated risks were found for cancers of the pharynx, the oesophagus and the joint category of alcohol-related sites. No clear evidence of an increased risk of thyroid cancer, leukaemia or radiation-related cancer sites combined was apparent. The SMR for all causes of death was 1.02 with 95% confidence interval 0.96–1.08 (1018 deaths). Excess mortality was observed for mouth and pharynx cancer, alcohol-related cancer sites together and suicide. Duration of stay rather than year of arrival was associated with increased mortality. Twenty-six years of follow-up of this cohort indicates no definite health effects attributable to radiation, but the elevated suicide risk has persisted. (paper)

Diffusion-weighted MR imaging of neuro-Behcet's disease: initial and follow-up studies

International Nuclear Information System (INIS)

Heo, Suk Hee; Seo, Jeong Jin; Kim, Heung Joong; Chang, Nam Gyu; Shin, Sang Soo; Jeong, Yong Yeon; Jeong Gwang Woo; Kang, Heoung Keun

2005-01-01

To assess the usefulness of diffusion-weighted MR imaging (DWI) and apparent diffusion coefficient (ADC) in the initial and follow-up studies of patients with neuro-Behcet's disease. Six patients diagnosed with neuro-Behcet's disease were the subjects of this study. Initial and follow-up MR imaging were obtained in all six patients. Initial and follow-up DWI were also obtained is four of the six patients, with only an initial DWI in the other two. The DWI were obtained using multi-shot echo planar imaging, on a 1.5T MR unit, with two gradient steps (b values of 0, 1000 sec/mm 2 ). The ADC value and ADC maps were obtained using commercial software. The locations and signal intensities of the lesions were analyzed on conventional MRI and DWI, respectively. The ADC values of the lesions were calculated on the initial and follow-up DWI, and compared those of lesions in the normal contralateral regions. The initial DWI showed iso-signal intensities in four of the six patients, with high signal intensities in the other two. In five of the six patients, including three of the four that showed isosignal intensities and the two that showed high signal intensities on the initial DWI, the ADC values of the involved lesions were higher than those of the normal contralateral regions. In three of four that showed isosignal intensities, the ADC values of the lesions were decreased and normalized on the follow-up DWI. Obtaining DWI and ADC values in patients with neuro-Behcet's disease may be helpful in the understanding of pathophysiology and differential diagnosis of this disease

The Danish Cerebral Palsy Follow-up Program

DEFF Research Database (Denmark)

Rasmussen, Helle Mätzke; Nordbye-Nielsen, Kirsten; Møller-Madsen, Bjarne

2016-01-01

AIM OF DATABASE: The Danish Cerebral Palsy Follow-up Program is a combined follow-up program and national clinical quality database that aims to monitor and improve the quality of health care for children with cerebral palsy (CP). STUDY POPULATION: The database includes children with CP aged 0...... indicators in three of five regions in Denmark comprising 432 children with CP, corresponding to a coverage of 82% of the expected population. CONCLUSION: The Danish Cerebral Palsy Follow-up Program is currently under development as a national clinical quality database in Denmark. The database holds...

The Brain Health Registry: An internet-based platform for recruitment, assessment, and longitudinal monitoring of participants for neuroscience studies.

Science.gov (United States)

Weiner, Michael W; Nosheny, Rachel; Camacho, Monica; Truran-Sacrey, Diana; Mackin, R Scott; Flenniken, Derek; Ulbricht, Aaron; Insel, Philip; Finley, Shannon; Fockler, Juliet; Veitch, Dallas

2018-05-08

Recruitment, assessment, and longitudinal monitoring of participants for neuroscience studies and clinical trials limit the development of new treatments. Widespread Internet use allows data capture from participants in an unsupervised setting. The Brain Health Registry, a website and online registry, collects data from participants and their study partners. The Brain Health Registry obtains self and study partner report questionnaires and neuropsychological data, including the Cogstate Brief Battery, Lumos Labs Neurocognitive Performance Test, and MemTrax Memory Test. Participants provide informed consent before participation. Baseline and longitudinal data were obtained from nearly 57,000 and 28,000 participants, respectively. Over 18,800 participants were referred to, and nearly 1800 were enrolled in, clinical Alzheimer's disease and aging studies, including five observational studies and seven intervention trials. Online assessments of participants and study partners provide useful information at relatively low cost for neuroscience studies and clinical trials and may ultimately be used in routine clinical practice. Copyright © 2018 the Alzheimer's Association. All rights reserved.

Follow-up services for stroke survivors after hospital discharge--a randomized control study

DEFF Research Database (Denmark)

Andersen, Hanne Elkjaer; Eriksen, Karen; Brown, Anne

2002-01-01

OBJECTIVE: To evaluate whether follow-up services for stroke survivors could improve functional outcome and reduce readmission rate. In this paper results of functional outcome are reported. DESIGN: Randomized controlled trial allocating patients to one of three different types of aftercare: (1......) follow-up home visits by a physician, (2) physiotherapist instruction in the patient's home, or (3) standard aftercare. SUBJECTS: Stroke patients with persisting impairment and disability who, after completing inpatient rehabilitation, were discharged to their homes. OUTCOME MEASURES: Six months after...... discharge, functional outcome was assessed with Functional Quality of Movement, Barthel Index, Frenchay Activity Index and Index of Extended Activites of Daily Living. RESULTS: One-hundred and fifty-five stroke patients were included in the study. Fifty-four received follow-up home visits by a physician, 53...

A Follow-up Study of Returning Students--A Concentration on Women.

Science.gov (United States)

Plotsky, Frances; Ohm, Susan

The office of Services for Returning Students (SRS) at the University of Texas (U.T.) at Austin conducted a follow-up study of men and women students who had visited the office from February 1969 to the end of 1971. The study ascertained the average interval between periods of formal education, the fulfillment of educational goals, and the use of…

Apparent and internal validity of a Monte Carlo-Markov model for cardiovascular disease in a cohort follow-up study.

Science.gov (United States)

Nijhuis, Rogier L; Stijnen, Theo; Peeters, Anna; Witteman, Jacqueline C M; Hofman, Albert; Hunink, M G Myriam

2006-01-01

To determine the apparent and internal validity of the Rotterdam Ischemic heart disease & Stroke Computer (RISC) model, a Monte Carlo-Markov model, designed to evaluate the impact of cardiovascular disease (CVD) risk factors and their modification on life expectancy (LE) and cardiovascular disease-free LE (DFLE) in a general population (hereinafter, these will be referred to together as (DF)LE). The model is based on data from the Rotterdam Study, a cohort follow-up study of 6871 subjects aged 55 years and older who visited the research center for risk factor assessment at baseline (1990-1993) and completed a follow-up visit 7 years later (original cohort). The transition probabilities and risk factor trends used in the RISC model were based on data from 3501 subjects (the study cohort). To validate the RISC model, the number of simulated CVD events during 7 years' follow-up were compared with the observed number of events in the study cohort and the original cohort, respectively, and simulated (DF)LEs were compared with the (DF)LEs calculated from multistate life tables. Both in the study cohort and in the original cohort, the simulated distribution of CVD events was consistent with the observed number of events (CVD deaths: 7.1% v. 6.6% and 7.4% v. 7.6%, respectively; non-CVD deaths: 11.2% v. 11.5% and 12.9% v. 13.0%, respectively). The distribution of (DF)LEs estimated with the RISC model consistently encompassed the (DF)LEs calculated with multistate life tables. The simulated events and (DF)LE estimates from the RISC model are consistent with observed data from a cohort follow-up study.

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.

TOSCA - first international registry to address knowledge gaps in the natural history and management of tuberous sclerosis complex.

Science.gov (United States)

Kingswood, John C; Bruzzi, Paolo; Curatolo, Paolo; de Vries, Petrus J; Fladrowski, Carla; Hertzberg, Christoph; Jansen, Anna C; Jozwiak, Sergiusz; Nabbout, Rima; Sauter, Matthias; Touraine, Renaud; O'Callaghan, Finbar; Zonnenberg, Bernard; Crippa, Stefania; Comis, Silvia; d'Augères, Guillaume Beaure; Belousova, Elena; Carter, Tom; Cottin, Vincent; Dahlin, Maria; Ferreira, José Carlos; Macaya, Alfons; Benedik, Mirjana Perkovic; Sander, Valentin; Youroukos, Sotirios; Castellana, Ramon; Ulker, Bulent; Feucht, Martha

2014-11-26

Tuberous sclerosis complex (TSC) is a rare, multisystem, genetic disorder with an estimated prevalence between 1/6800 and 1/15000. Although recent years have seen huge progress in understanding the pathophysiology and in the management of TSC, several questions remain unanswered. A disease registry could be an effective tool to gain more insights into TSC and thus help in the development of improved management strategies. TuberOus SClerosis registry to increase disease Awareness (TOSCA) is a multicentre, international disease registry to assess manifestations, interventions, and outcomes in patients with TSC. Patients of any age diagnosed with TSC, having a documented visit for TSC within the preceding 12 months, or newly diagnosed individuals are eligible. Objectives include mapping the course of TSC manifestations and their effects on prognosis, identifying patients with rare symptoms and co-morbidities, recording interventions and their outcomes, contributing to creation of an evidence-base for disease assessment and therapy, informing further research on TSC, and evaluating the quality of life of patients with TSC. The registry includes a 'core' section and subsections or 'petals'. The 'core' section is designed to record general information on patients' background collected at baseline and updated annually. Subsections will be developed over time to record additional data related to specific disease manifestations and will be updated annually. The registry aimed to enrol approximately 2000 patients from about 250 sites in 31 countries. The initial enrolment period was of 24 months. A follow-up observation period of up to 5 years is planned. A pre-planned administrative analysis of 'core' data from the first 100 patients was performed to evaluate the feasibility of the registry. Results showed a high degree of accuracy of the data collection procedure. Annual interim analyses are scheduled. Results of first interim analysis will be presented subsequent to

Effects of surgery on ischaemic mitral regurgitation: a prospective multicentre registry (SIMRAM registry)

DEFF Research Database (Denmark)

Lancellotti, P.; Donal, E.; Cosyns, B.

2008-01-01

at rest. Exercise echocardiography may help identify a subset of patients at higher risk of cardiovascular events by revealing the dynamic component of IMR. METHODS: A large prospective, multicentre, non-randomized registry is designed to evaluate the effects of surgery on IMR at rest and on its dynamic......AIMS: Functional ischaemic mitral regurgitation (IMR) is common in patients with ischaemic left ventricular dysfunction undergoing coronary artery bypass surgery. Although the presence of IMR negatively affects prognosis, the additional benefit of valve repair is debated, particularly with mild IMR...... component at exercise (z). SIMRAM will enrol approximately 550 patients with IMR in up to 17 centres with clinical and exercise follow-up for 1 year. Three sets of outcomes will be prospectively assessed and several hypotheses will be tested including determinants of adverse outcome and progressive left...

Atypical case of Reye's syndrome. Usefulness of CT for diagnosis and follow-up study

Energy Technology Data Exchange (ETDEWEB)

Maehara, Fumiaki; Goto, Katsuya; Okudera, Toshio; Mitsudome, Akihisa; Hara, Kunio; Shiraishi, Masayuki [Fukuoka Univ. (Japan)

1982-12-01

An atypical case of Reye's syndrome was reported with emphasis on usefulness of CT for the diagnosis and follow-up study of this disease. The patient was a 13-month-old girl who had been transferred to our hospital because of status epilepticus, a comatous state and a high temperature. She was diagnosed as having Reye's syndrome according to data of liver function tests, findings in CSF and body CT which revealed swelling of the liver with diminished attenuation value suggesting fatty infiltration. However, there were atypical features in this patient: epileptic seizures since age 5 months, no vomiting at the time of onset and no evidence of brain swelling on CT in acute phase. She was discharged 2 months later with impaired neuropsychological functions of marked degree. When she was 2 year-old, she again went into status epilepticus, was comatous and had a high temperature. She was dead when she arrived at emergency room of our hospital. Autopsy findings revealed features of Reye's syndrome as follows: abundant accumulation of small fat droplets without nuclear displacement in the liver, fatty infiltration in the kidney and myocardium, and mild swelling in the cerebral cortex with marked ventricular dilatation. The possibility of recurrence of Reye's syndrome was discussed based on the clinical and autopsy findings. The value of CT in the diagnosis and the follow-up study of this disease was emphasized.

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

End-stage renal disease after occupational lead exposure: 20 years of follow-up.

Science.gov (United States)

Evans, Marie; Discacciati, Andrea; Quershi, Abdul Rashid; Åkesson, Agneta; Elinder, Carl-Gustaf

2017-06-01

Whether low-level exposure to lead may give rise to chronic kidney disease or end-stage renal disease (ESRD) is debated. In this study, we aimed to specifically investigate if low-level occupational exposure to lead was associated with increased incidence of ESRD. The incidence of starting renal replacement therapy as a result of ESRD was examined in a cohort of10 303 lead-workers who had controlled blood lead concentrations due to a compulsory occupational health surveillance programme in Sweden during the time period 1977-1990. The ESRD incidence (obtained through register-linkage) among the lead-exposed workers was compared with the age, sex and calendar period-adjusted expected incidence based on data from the Swedish renal registry. Dose-response association was evaluated in external (general population) and internal (within the occupational cohort) comparisons by highest achieved blood lead level. There were 30 (0.29%) individuals in the cohort who developed ESRD during the median follow-up period of 26.3 years. The standardised incidence ratio (SIR) for ESRD incidence was 0.79 (95% CI 0.54 to 1.13). Among those who achieved the highest blood lead (>41.4 µg/dL), the SIR was 1.01 (0.44 to 1.99). There was no evidence of a dose-response relationship between the maximum achieved blood lead or the cumulative blood lead exposure and ESRD in external or internal comparisons. This study of workers with documented occupational lead exposures followed for 20 years shows no statistically significant association between lead exposure (following the current occupational recommendations for Sweden) and ESRD. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

Predictors for Stroke and Death in Non-Anticoagulated Asian Patients with Atrial Fibrillation: The Fushimi AF Registry.

Science.gov (United States)

Hamatani, Yasuhiro; Yamashita, Yugo; Esato, Masahiro; Chun, Yeong-Hwa; Tsuji, Hikari; Wada, Hiromichi; Hasegawa, Koji; Abe, Mitsuru; Lip, Gregory Y H; Akao, Masaharu

2015-01-01

Atrial fibrillation (AF) increases the risk of stroke and death. Data on the predictors for stroke and death in 'real-world' AF patients are limited, especially from large prospective Asian cohorts. The Fushimi AF Registry is a community-based prospective survey designed to enroll all AF patients who visited the participating medical institutions in Fushimi-ku, Kyoto, Japan. Follow-up data were available for 3,304 patients (median follow-up period 741 days). We explored the predictors for 'death, stroke, and systemic embolism (SE)' during follow-up in 1,541 patients not receiving oral anticoagulants (OAC) at baseline. The mean age was 73.1 ± 12.5 years, and 673 (44%) patients were female. The mean CHADS2 and CHA2DS2-VASc scores were 1.76 and 3.08, respectively. Cumulative events were as follows: stroke/SE in 61 (4%) and death in 230 (15%), respectively. On multivariate analysis, advanced age (hazard ratio (HR): 1.68, 95% confidence interval (CI): 1.24-2.29), underweight (body mass index death/stroke/SE. Cumulative numbers of these 6 risk predictors could stratify the incidence of death/stroke/SE in patients without OAC, as well as those with OAC in our registry. Advanced age, underweight, previous stroke/SE/transient ischemic attack, heart failure, chronic kidney disease, and anemia were independently associated with the risk of death/stroke/SE in non-anticoagulated Japanese AF patients.

Effect of follow-up period on minimal-significant dose in the atomic-bomb survivor studies

Energy Technology Data Exchange (ETDEWEB)

Cologne, John; Grant, Eric J.; Cullings, Harry M.; Ozasa, Kotaro [Radiation Effects Research Foundation, Hiroshima (Japan); Preston, Dale L. [Hirosoft International, Eureka, CA (United States)

2018-03-15

It was recently suggested that earlier reports on solid-cancer mortality and incidence in the Life Span Study of atomic-bomb survivors contain still-useful information about low-dose risk that should not be ignored, because longer follow-up may lead to attenuated estimates of low-dose risk due to longer time since exposure. Here it is demonstrated, through the use of all follow-up data and risk models stratified on period of follow-up (as opposed to sub-setting the data by follow-up period), that the appearance of risk attenuation over time may be the result of less-precise risk estimation - in particular, imprecise estimation of effect-modification parameters - in the earlier periods. Longer follow-up, in addition to allowing more-precise estimation of risk due to larger numbers of radiation-related cases, provides more-precise adjustment for background mortality or incidence and more-accurate assessment of risk modification by age at exposure and attained age. It is concluded that the latest follow-up data are most appropriate for inferring low-dose risk. Furthermore, if researchers are interested in effects of time since exposure, the most-recent follow-up data should be considered rather than the results of earlier reports. (orig.)

Acute heart failure in the emergency department: a follow-up study.

Science.gov (United States)

Fabbri, Andrea; Marchesini, Giulio; Carbone, Giorgio; Cosentini, Roberto; Ferrari, Annamaria; Chiesa, Mauro; Bertini, Alessio; Rea, Federico

2016-02-01

Acute heart failure (AHF) is a major public health issue due to high incidence and poor prognosis. Only a few studies are available on the long-term prognosis and on outcome predictors in the unselected population attending the emergency department (ED) for AHF. We carried out a 1-year follow-up analysis of 1234 consecutive patients from selected Italian EDs from January 2011 to June 2012 for an episode of AHF. Their prognosis and outcome-associated factors were tested by Cox proportional hazard model. Patients' mean age was 84, with 66.0% over 80 years and 56.2% females. Comorbidities were present in over 50% of cases, principally a history of acute coronary syndrome, chronic obstructive pulmonary disease, diabetes, chronic kidney disease, valvular heart disease. Death occurred within 6 h in 24 cases (1.9%). At 30-day follow-up, death was registered in 123 cases (10.0%): 110 cases (89.4%) died of cardiovascular events and 13 (10.6%) of non-cardiovascular causes (cancer, gastrointestinal hemorrhages, sepsis, trauma). At 1-year follow-up, all-cause death was recorded in 50.1% (over 3 out of 4 cases for cardiovascular origin). Six variables (older age, diabetes, systolic arterial pressure capacity (AUC = 0.649; SE 0.015). Recurrence of AHF was registered in 31.0%. The study identifies a cluster of variables associated with 1-year mortality in AHF, but their predictive capacity is low. Old age and the presence of comorbidities, in particular diabetes are likely to play a major role in dictating the prognosis.

Follow-up of prenatally diagnosed unilateral hydronephrosis

DEFF Research Database (Denmark)

Thorup, Jørgen Mogens; Lenz, K; Rabol, A

1996-01-01

Based on previous experience with prenatally diagnosed unilateral hydronephrosis, we found that the primary indications for surgical intervention should be symptoms or functional impairment of the hydronephrotic kidney. Nonoperative management of neonates without symptoms and with normal function...... of the affected kidney was proposed. However, the strategy of treatment after prenatally diagnosed hydronephrosis is still controversial. We studied 28 consecutive children with suspected unilateral pelviureteral junction obstruction and a normal contralateral kidney. The overall follow-up period varied between 2...

Esophageal atresia: long-term interdisciplinary follow-up

Directory of Open Access Journals (Sweden)

Lidia B. Giúdici

2016-07-01

Full Text Available Background: We provide protocolized interdisciplinary follow-up to babies born with Esophageal Atresia (EA. There are few reports in Argentina about follow-up of EA patients.Objective: To describe outcomes in follow-up of EA patients at 1, 3 and 6 years old and to compare outcomes at age 1 with those at age 6.Methods: Prospective, longitudinal, analytic study of the cohort of babies born with EA, admitted to the follow-up program from 11/01/03 to 10/31/14. Follow-up includes: growth (weight > 10th centile, WHO, neurology-psychomotor development, audiology, vision, genetic, mental health, surgical reintervention, phonostomatology, language, pulmonology, re-hospitalization for clinical causes, lost to follow-up. Outcomes were described at age 1, 3 and 6. We included all EA patients who had reached age 1 at the start of this study.Results: 27 babies were admitted; 30% had long-gap EA; 18% presented VACTERL association; 23 children met inclusion criteria. Genetics  was assessed in 18 newborns (78%; a chromosomal map was performed in 11 babies; 3 had an abnormal karyotype. Mental health: 5/14 of the assessed children showed problems. Phonostomatology: 11 newborns checked (6 required treatment, 4 recovered at age 1. Pulmonologist evaluated 18 babies (7 with recurrent wheezing, 6 with moderate tracheomalacia. Gastroenterology and endoscopy: 80% presented gastroesophageal reflux (GER grade 3-4, and 50% showed a pathologic pHmetry. Lost to follow-up: age 1, 2 (8%; age 3, 3 (17%; age 6, 3 (23%. Normal outcomes observed are the following. Age 1 – growth: 81%; neurologic-psychomotor developmental index (NPDI: 76%; audiology: 95%; vision: 85%; language: 62%; re-hospitalization for clinical causes: 38%; surgical reinterventions: 47%. Age 3 – growth: 78%; NPDI: 50%; audiology: 93%; vision: 93%; language: 43%; re-hospitalization: 35%; surgical reinterventions: 14%. Age 6 – growth: 50%; NPDI: 30%; audiology: 90%; vision: 40%; language: 50%; re

Innovative postmarket device evaluation using a quality registry to monitor thoracic endovascular aortic repair in the treatment of aortic dissection.

Science.gov (United States)

Beck, Adam W; Lombardi, Joseph V; Abel, Dorothy B; Morales, J Pablo; Marinac-Dabic, Danica; Wang, Grace; Azizzadeh, Ali; Kern, John; Fillinger, Mark; White, Rodney; Cronenwett, Jack L; Cambria, Richard P

2017-05-01

United States Food and Drug Administration (FDA)-mandated postapproval studies have long been a mainstay of the continued evaluation of high-risk medical devices after initial marketing approval; however, these studies often present challenges related to patient/physician recruitment and retention. Retrospective single-center studies also do not fully represent the spectrum of real-world performance nor are they likely to have a sufficiently large enough sample size to detect important signals. In recent years, The FDA Center for Devices and Radiological Health has been promoting the development and use of patient registries to advance infrastructure and methodologies for medical device investigation. The FDA 2012 document, "Strengthening the National System for Medical Device Post-market Surveillance," highlighted registries as a core foundational infrastructure when linked to other complementary data sources, including embedded unique device identification. The Vascular Quality Initiative (VQI) thoracic endovascular aortic repair for type B aortic dissection project is an innovative method of using quality improvement registries to meet the needs of device evaluation after market approval. Here we report the organization and background of this project and highlight the innovation facilitated by collaboration of physicians, the FDA, and device manufacturers. This effort used an existing national network of VQI participants to capture patients undergoing thoracic endovascular aortic repair for acute type B aortic dissection within a registry that aligns with standard practice and existing quality efforts. The VQI captures detailed patient, device, and procedural data for consecutive eligible cases under the auspices of a Patient Safety Organization (PSO). Patients were divided into a 5-year follow-up group (200 acute; 200 chronic dissections) and a 1-year follow-up group (100 acute; 100 chronic). The 5-year cohort required additional imaging details, and the 1-year

Irritable bowel syndrome--prognosis and diagnostic safety. A 5-year follow-up study

DEFF Research Database (Denmark)

Svendsen, Jesper Hastrup; Munck, L K; Andersen, J R

1985-01-01

The irritable bowel syndrome is the commonest diagnosis in gastroenterological clinics, although diagnostic criteria and investigatory programs vary. To elucidate the diagnostic safety and prognosis of the syndrome, a retrospective study was conducted. One hundred and twelve consecutive patients...... with irritable bowel syndrome as the final and only abdominal diagnosis in the period 1977-79 were followed up in 1984. Seventeen patients died during the follow-up period; two of these were considered diagnostic failures (chronic pancreatitis and pancreatic cancer). Of the remaining 95 patients, 93 were...

Statistics of bone sarcoma in Japan: Report from the Bone and Soft Tissue Tumor Registry in Japan.

Science.gov (United States)

Ogura, Koichi; Higashi, Takahiro; Kawai, Akira

2017-01-01

No previous reports to date have characterized the national profiles of bone sarcoma overall. In the present study, we aimed to describe the nationwide statistics of bone sarcoma in Japan by analyzing data from the Bone and Soft Tissue Tumor (BSTT) Registry in Japan, which is a nationwide organ-specific cancer registry for bone and soft tissue tumor. We identified 2773 patients with bone sarcomas using the BSTT Registry during 2006-2012. We extracted the data regarding patient demographics, treatment, and prognosis at the last follow-up for each patient. There was a slight male preponderance. The age distribution had 2 peaks overall: one in the second decade and the other in the sixth to seventh decade with the proportion of the elderly patients over 60 years approximately 30%. The most frequent tumor locations were the lower extremity (N = 1342; 48.4%) and the trunk (N = 1038; 37.4%). We also showed the significant association between disease-specific survival and patient's age, histologic grade and subtype, tumor size and location, and limb salvage status based on 1401 patients with bone sarcoma, and demonstrated the worst disease-specific survival in the elderly patients. The present study is the first study to have analyzed data from the BSTT Registry and has provided an overview of the epidemiology, clinical features, treatment, prognosis, and significant factors affecting prognosis of patients with bone sarcoma in Japan based on cases assumed to have received relatively uniform treatment strategies. It is essential to document our data regarding the outcomes of elderly patients so that other countries showing similar population aging trends can learn from our experiences. Copyright © 2016 The Japanese Orthopaedic Association. Published by Elsevier B.V. All rights reserved.

[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.

a national register-based follow-up study of 15-to 19-year-old Finnish delinquents referred for forensic psychiatric examination between 1980 and 2010

OpenAIRE

Lindberg, Nina; Miettunen, Jouko; Heiskala, Anni; Kaltiala-Heino, Riittakerttu

2017-01-01

Abstract Background: The mortality rate of young offenders is high. Furthermore, mortality in young offenders is associated with psychiatric and substance use disorders. The primary aim of this national register-based follow-up study was to investigate the mortality rate of Finnish delinquents who underwent a forensic psychiatric examination between 1980 and 2010. As delinquency is not a solid entity, we further aimed to compare the risk of premature death among different subgroups of the ...

Mutational analysis and genotype-phenotype relation in familial hypercholesterolemia: The SAFEHEART registry.

Science.gov (United States)

Bourbon, Mafalda; Alves, Ana Catarina; Alonso, Rodrigo; Mata, Nelva; Aguiar, Pedro; Padró, Teresa; Mata, Pedro

2017-07-01

Familial hypercholesterolemia (FH) is an autosomal dominant disease of cholesterol metabolism that confers an increased risk of premature atherosclerotic cardiovascular disease (ASCVD). Therefore, early identification and treatment of these patients can improve prognosis and reduce the burden of cardiovascular mortality. The aim of this work was to perform the mutational analysis of the SAFEHEART (Spanish Familial Hypercholesterolaemia Cohort Study) registry. The study recruited 2938 individuals with genetic diagnosis of FH belonging to 775 families. Statistical analysis was performed using SPSS v23. A total of 194 variants have been detected in this study, 24 of them were never described before. About 88% of the patients have a pathogenic or likely pathogenic variant. Patients with null variants have a more severe phenotype than patients with defective variants, presenting with significantly higher levels of atherogenic particles (total cholesterol, LDL-cholesterol and apolipoprotein B). This study shows the molecular characteristics of the FH patients included in the SAFEHEART registry and the relationship with the phenotypic expression. The majority of the genetic variants are considered to be pathogenic or likely pathogenic, which confers a high level of confidence to the entry and follow-up data analysis performed with this registry concerning FH patients' prognosis, treatment and survival. Copyright © 2017 Elsevier B.V. All rights reserved.

Temporal relationship between depression and dementia – findings from a large community-based 15 year follow-up study

Science.gov (United States)

Li, Ge; Wang, Lucy Y.; Shofer, Jane B.; Thompson, Mary Lou; Peskind, Elaine R.; McCormick, Wayne; Bowen, James D.; Crane, Paul K.; Larson, Eric B.

2012-01-01

Context Late-life depression is associated with increased risk of dementia but the temporal relationship between depression and development of dementia remains unclear. Objectives To examine the association between risk of dementia and 1) baseline depressive symptoms ; 2) past history of depression, particularly early-life (depression; and 3) individual domains of the Center for Epidemiologic Studies Depression Scale (CESD). Design A large cohort with initially non-demented participants was followed biennially for up to 15 years for incident dementia. Baseline depressive symptoms were assessed using the 11-item version of CESD (CESD-11), and defined as CESD-11 score ≥ 11. Self-reported history of depression was collected at the baseline interview. Cox proportional hazards regression was used to assess the association between depression and the dementia risk. Setting Population-based cohort drawn from members of Group Health Cooperative in Seattle, Washington. Participants A cohort of 3,410 participants without dementia aged ≥ 65 years. Results Over an average of 7.1 years follow-up, 658 participants (19%) developed dementia. At baseline, 9% of participants had depressive symptoms (CESD-11 ≥ 11) and 21% reported a past history of depression. The adjusted hazard ratio (aHR) for dementia associated with baseline depressive symptoms was 1.71 (95% confidence interval 1.37, 2.13), after adjusting for age-at-entry, gender, education, and wave of enrollment. Compared to participants without depression history, those with late-life depression were at increased dementia risk (aHR =1.46 [1.16, 1.84]), but early-life depression had no association with dementia risk (aHR=1.10 [0.83, 1.47]). Depressed mood (aHR 1.48 [1.25, 1.76]) and perceived performance difficulty (aHR 1.39 [1.15, 1.67]) were independently associated with dementia. Conclusions This study confirmed previous observations of an association between late-life depression and increased risk of dementia and

[Gender dysphoria in children and adolescents - treatment guidelines and follow-up study].

Science.gov (United States)

Meyenburg, Bernd; Kröger, Anne; Neugebauer, Rebecca

2015-01-01

Treatment guidelines for transidentity in children and adolescents are presently under discussion. We present an overview of the various treatment modalities. Further, follow-up data on children and adolescents referred for gender-identity problems are presented. Of the 84 patients seen for the first time more than 3 years before follow-up, 37 mailed in the completed questionnaires. In addition, 33 patients agreed to answer some short follow-up questions. We assessed steps of treatment, gender role, psychopathology, and psychotherapy. We compared differences in psychopathology in patients with vs. without gender role change and in patients with intense vs. less intense psychotherapy. A total of 22 patients had completely changed gender role, and some had started hormonal treatment und sex reassignment surgery. Most patients were satisfied with the treatment results. All patients showed less psychopathology on follow-up, independent of role change or intensity of psychotherapy. In general, the patients reported little psychopathology. Our follow-up results support the present treatment approach. In patients with little psychopathology, low-frequency supportive treatment appears sufficient to obtain safe judgement on hormonal of surgical treatment.

Hydrotherapy after total knee arthroplasty. A follow-up study.

Science.gov (United States)

Giaquinto, S; Ciotola, E; Dall'Armi, V; Margutti, F

2010-01-01

The study evaluated the subjective functional outcome following total knee arthroplasty (TKA) in participants who underwent hydrotherapy (HT) six months after discharge from a rehabilitation unit. A total of 70 subjects, 12 of which were lost at follow-up, were randomly assigned to either a conventional gym treatment (N=30) or HT (N=28). A prospective design was performed. Participants were interviewed with Western-Ontario McMasters Universities Osteoarthritis Index (WOMAC) at admission, at discharge and six months later. Kruskal-Wallis and Wilcoxon tests were applied for statistical analysis. Both groups improved. The WOMAC subscales, namely pain, stiffness and function, were all positively affected. Statistical analysis indicates that scores on all subscales were significantly lower for the HT group. The benefits gained by the time of discharge were still found after six months. HT is recommended after TKA in a geriatric population. Copyright 2009 Elsevier Ireland Ltd. All rights reserved.

Factors Associated with Relapse among Heroin Addicts: Evidence from a Two-Year Community-Based Follow-Up Study in China

Directory of Open Access Journals (Sweden)

Chao Rong

2016-01-01

Full Text Available Background: Many countries including China are facing a serious opiate dependence problem. Anti-drug work effectiveness was affected by the high relapse rate all over the world. This study aims to analyze the factors influencing heroin addict relapse, and to provide evidence for generating relapse prevention strategies. Methods: A community-based follow-up study was conducted in China between October 2010 and September 2012. A total of 554 heroin addicts in accordance with the inclusion criteria from 81 streets in 12 districts of Shanghai, China were divided into 4 groups: group 1—daily dosage taken orally of 60 mL of methadone or under combined with psychological counseling and social supports (n = 130; group 2—daily dosage taken orally of over 60 mL of methadone combined with psychological counseling and social supports (n = 50; group 3—JTT (Jitai tablets combined with psychological counseling and social supports (n = 206; group 4—JTT combined with social supports (n = 168. Results: Log-rank test results showed that the cumulative relapse rate differences among four groups during the two-year follow-up period were not statistically significant (χ2 = 5.889, p = 0.117. Multivariate Cox regression analysis results showed that only three independent variables were still statistically significant, including compliance with participation in psychological counseling (OR = 3.563, p = 0.000, the years of drug use (OR = 1.078, p = 0.001and intervention model. Conclusions: Using the detoxification medications combined with appropriate psychological counseling and social support measures will help improve the effectiveness of relapse prevention, which is a kind of alternative community detoxification pattern. Appropriate and standard psychological counseling is very important for anti-drug treatment. The longer the drug addiction lasts, the longer the anti-drug treatment takes.

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

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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.

Changes in Perceived Supervision Quality After Introduction of Competency-Based Orthopedic Residency Training: A National 6-Year Follow-Up Study.

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van Vendeloo, Stefan N; Brand, Paul L P; Kollen, Boudewijn J; Verheyen, Cees C P M

2018-04-27

To evaluate the perceived quality of the learning environment, before and after introduction of competency-based postgraduate orthopedic education. From 2009 to 2014, we conducted annual surveys among Dutch orthopedic residents. The validated Dutch Residency Educational Climate Test (D-RECT, 50 items on 11 subscales) was used to assess the quality of the learning environment. Scores range from 1 (poor) to 5 (excellent). Dynamic cohort follow-up study. All Dutch orthopedic residents were surveyed during annual compulsory courses. Over the 6-year period, 641 responses were obtained (response rate 92%). Scores for "supervision" (95% CI for difference 0.06-0.28, p = 0.002) and "coaching and assessment" (95% CI 0.11-0.35, p < 0.001) improved significantly after introduction of competency-based training. There was no significant change in score on the other subscales of the D-RECT. After the introduction of some of the core components of competency-based postgraduate orthopedic education the perceived quality of "supervision" and "coaching and assessment" improved significantly. Copyright © 2018 Association of Program Directors in Surgery. Published by Elsevier Inc. All rights reserved.

The cost of long-term follow-up of high-risk infants for research studies.

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Doyle, Lex W; Clucas, Luisa; Roberts, Gehan; Davis, Noni; Duff, Julianne; Callanan, Catherine; McDonald, Marion; Anderson, Peter J; Cheong, Jeanie L Y

2015-10-01

Neonatal intensive care is expensive, and thus it is essential that its long-term outcomes are measured. The costs of follow-up studies for high-risk children who survive are unknown. This study aims to determine current costs for the assessment of health and development of children followed up in our research programme. Costs were determined for children involved in the research follow-up programme at the Royal Women's Hospital, Melbourne, over the 6-month period between 1st January 2012 and 30th June 2012. The time required for health professionals involved in assessments in early and later childhood was estimated, and converted into dollar costs. Costs for equipment and data management were added. Estimated costs were compared with actual costs of running the research follow-up programme. A total of 134 children were assessed over the 6-month period. The estimated average cost per child assessed was $1184, much higher than was expected. The estimated cost to assess a toddler was $1149, whereas for an 11-year-old it was $1443, the difference attributable to the longer psychological and paediatric assessments. The actual average cost per child assessed was $1623. The shortfall of $439 between the actual and estimated average costs per child arose chiefly because of the need to pay staff even when participants were late or failed to attend. The average costs of assessing children at each age for research studies are much higher than expected. These data are useful for planning similar long-term follow-up assessments for high-risk children. © 2015 The Authors. Journal of Paediatrics and Child Health © 2015 Paediatrics and Child Health Division (Royal Australasian College of Physicians).

Revision for prosthetic joint infection following hip arthroplasty: Evidence from the National Joint Registry.

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Lenguerrand, E; Whitehouse, M R; Beswick, A D; Jones, S A; Porter, M L; Blom, A W

2017-06-01

We used the National Joint Registry for England, Wales, Northern Ireland and the Isle of Man (NJR) to investigate the risk of revision due to prosthetic joint infection (PJI) for patients undergoing primary and revision hip arthroplasty, the changes in risk over time, and the overall burden created by PJI. We analysed revision total hip arthroplasties (THAs) performed due to a diagnosis of PJI and the linked index procedures recorded in the NJR between 2003 and 2014. The cohort analysed consisted of 623 253 index primary hip arthroplasties, 63 222 index revision hip arthroplasties and 7585 revision THAs performed due to a diagnosis of PJI. The prevalence, cumulative incidence functions and the burden of PJI (total procedures) were calculated. Overall linear trends were investigated with log-linear regression. We demonstrated a prevalence of revision THA due to prosthetic joint infection of 0.4/100 procedures following primary and 1.6/100 procedures following revision hip arthroplasty. The prevalence of revision due to PJI in the three months following primary hip arthroplasty has risen 2.3-fold (95% confidence interval (CI) 1.3 to 4.1) between 2005 and 2013, and 3.0-fold (95% CI 1.1 to 8.5) following revision hip arthroplasty. Over 1000 procedures are performed annually as a consequence of hip PJI, an increase of 2.6-fold between 2005 and 2013. Although the risk of revision due to PJI following hip arthroplasty is low, it is rising and, coupled with the established and further predicted increased incidence of both primary and revision hip arthroplasty, this represents a growing and substantial treatment burden. Cite this article : E. Lenguerrand, M. R. Whitehouse, A. D. Beswick, S. A. Jones, M. L. Porter, A. W. Blom. Revision for prosthetic joint infection following hip arthroplasty: Evidence from the National Joint Registry. Bone Joint Res 2017;6:391-398. DOI: 10.1302/2046-3758.66.BJR-2017-0003.R1. © 2017 Lenguerrand et al.

Buckling up in Singapore: residency and other risk factors for seatbelt non-compliance - a cross-sectional study based on trauma registry data.

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Wong, Ting Hway; Lim, Gek Hsiang; Chow, Khuan Yew; Zaw, Nyi Nyi; Nguyen, Hai Van; Chin, Hoong Chor; Ong, Marcus Eng Hock

2016-05-14

Seatbelt non-compliance is a problem in middle income countries, and little is known about seatbelt compliance in populations with a high proportion of non-residents. This study analyses the profile of seatbelt non-compliance in Singapore based on trauma registry data from five of the six public hospitals. This is a cross-sectional study of seatbelt compliance of patients aged over 18 years, attending the emergency departments of five public hospitals in Singapore after road collisions from 2011-2014. Seatbelt data was obtained from paramedic and patient history. There were 4,576 patients studied. Most were Singapore citizens (83.4 %) or permanent residents (2.4 %), with the largest non-resident groups from Malaysia, India, and China. Overall seatbelt compliance was 82.1 %. On univariate analysis, seatbelt compliance was higher in older patients (OR 1.02, 95 % CI 1.001-1.021, p < 0.0001); drivers, followed by front passengers (OR 0.65, 95 % CI 0.51-0.83, p < 0.0001), were more compliant than rear passengers (OR 0.08, 0.06-0.09, p < 0.0001); occupants of larger vehicle types (buses, heavy transport vehicles, minibuses and vans) were more non-compliant compared to occupants of private cars and taxis. Morning peak travel (0700 h-0900 h) and being a non-resident were other risk factors for non-compliance. On multivariable analysis, older age (OR 1.01, 95 % CI 1.001-1.014, p = 0.03) was associated with compliance, while non-residents from China (OR 0.43, 95 % CI 0.18-0.99, p = 0.05), seat position (front passenger compared to driver, OR 0.64, 95 % CI 0.48-0.85, p = 0.002; rear passenger compared to driver, OR 0.067, 95 % CI 0.05-0.09, p < 0.0001), vehicle type (bus compared to car, OR 0.04, 95 % CI 0.017-0.11, p < 0.0001, van compared to car, OR 0.55, 95 % CI 0.36-0.83, p = 0.004), and travel at morning peak periods were independent predictors of seatbelt non-compliance. When the sub-group of drivers was analysed, only

The tinnitus intensive therapy habituation program: a 2-year follow-up pilot study on subjective tinnitus.

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Bessman, Peter; Heider, Tom; Watten, Veslemøy P; Watten, Reidulf G

2009-05-01

To explore the effects of a new tinnitus treatment program (tinnitus intensive therapy [TIT]) based on auditory perception principles and neural habituation. A follow-up study with measurement of treatment effects every third month over a 2-year period in which the cases were their own controls. There were 25 participants with a mean age 50.1 years (SD = 16.1); 10 women (52.7 years; SD = 16.8) and 15 men (48.3 years; SD = 15.9). The participants were recruited from clinical population admitted to a polyclinic tinnitus treatment program in western Germany. There was a significant reduction of tinnitus in the follow-up period. Mean baseline tinnitus scores (Tinnitus Fragebogen; Goebel & Hiller, 1998) at the start of the treatment were 50.9 (SD = 14.5) and the final scores were 14.2 (SD = 5.9). In total, the clinical improvement over the follow-up period was 72.1%. The TIT program showed a significant clinical treatment effect and should be tested further in a multicenter treatment project. The findings support the Jastreboff habituation model of tinnitus, but social cognitive factors should also be taken into account. (PsycINFO Database Record (c) 2009 APA, all rights reserved).

Clinical outcomes with the STENTYS self-apposing coronary stent in patients presenting with ST-segment elevation myocardial infarction: two-year insights from the APPOSITION III (A Post-Market registry to assess the STENTYS self-exPanding COronary Stent In AcuTe MyocardIal InfarctiON) registry.

Science.gov (United States)

Lu, Huangling; Grundeken, Maik J; Vos, Nicola S; IJsselmuiden, Alexander J J; van Geuns, Robert-Jan; Wessely, Rainer; Dengler, Thomas; La Manna, Alessio; Silvain, Johanne; Montalescot, Gilles; Spaargaren, René; Tijssen, Jan G P; Amoroso, Giovanni; de Winter, Robbert J; Koch, Karel T

2017-08-04

The APPOSITION III registry evaluated the feasibility and performance of the STENTYS self-apposing stent in an ST-segment elevation myocardial infarction (STEMI) population. This novel self-apposing stent device lowers stent strut malapposition rates and therefore carries the potential to prevent stent undersizing during primary percutaneous coronary intervention (PCI) in STEMI patients. To date, no long-term data are available using this device in the setting of STEMI. We aimed to evaluate the long-term clinical outcomes of the APPOSITION III registry. This was an international, prospective, multicentre post-marketing registry. The study population consisted of 965 STEMI patients. The primary endpoint, major adverse cardiac events (MACE), was defined as the composite of cardiac death, recurrent target vessel myocardial infarction (TV-MI), and clinically driven target lesion revascularisation (CD-TLR). At two years, MACE occurred in 11.2%, cardiac death occurred in 2.3%, TV-MI occurred in 2.3% and CD-TLR in 9.2% of patients. The two-year definite stent thrombosis (ST) rate was 3.3%. Incremental event rates between one- and two-year follow-up were 1.0% for TV-MI, 1.8% for CD-TLR, and 0.5% for definite ST. Post-dilation resulted in significantly reduced CD-TLR and ST rates at 30-day landmark analyses. Results were equivalent between the BMS and PES STENTYS subgroups. This registry revealed low rates of adverse events at two-year follow-up, with an incremental ST rate as low as 0.5% in the second year, demonstrating that the self-apposing technique is feasible in STEMI patients on long-term follow-up while using post-dilatation.

Occupational Physical Activity, Overweight, and Mortality: A Follow-Up Study of 47,405 Norwegian Women and Men

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Graff-Iversen, Sidsel; Selmer, Randi; Sorensen, Marit; Skurtveit, Svetlana

2007-01-01

This population-based 24-year follow-up study evaluated the association of occupational physical activity (OPA) with overweight and mortality in 47,405 men and women, healthy at baseline, and reporting OPA as sedentary (reference), light, moderately heavy, or heavy. The adjusted odds ratio for overweight was slightly less than 1 for all categories…

Can follow-up controls improve the confidence of MR of the breast? A retrospective analysis of follow-up MR images of the breast

International Nuclear Information System (INIS)

Betsch, A.; Arndt, E.; Stern, W.; Claussen, C.D.; Mueller-Schimpfle, M.; Wallwiener, D.

2001-01-01

Purpose: To assess the change in diagnostic confidence between first and follow-up dynamic MR examination of the breast (MRM). Methods: The reports of a total of 175 MRM in 77 patients (mean age 50 years; 36-76) with 98 follow-up MRM were analyzed. All examinations were performed as a dynamic study (Gd-DTPA, 0.16 mmol/kg; 6-7 repetitive studies). The change in diagnostic confidence was retrospectively classified as follows: Controlled lesion vanished during follow-up (category I); diagnostic confidence increases during follow-up (II), more likely benign (IIa), more suspicious (IIb); no difference in diagnostic confidence (III). Long-term follow-up over an average of four years was obtained for 57 patients with category IIa/III findings. Results: In 98 follow-up examinations, only two lesions vanished (2%). In 77/98 cases a category IIa lesion was diagnosed, in 11 cases a category IIb lesion. In 8 cases (8%) there was no change in diagnostic confidence during follow-up. Lesions in category IIb underwent biopsy in 10/11 cases, in one case long-term follow-up proved a completely regredient inflammatory change. In 8/11 suspicious findings (IIb) a malignant tumor was detected. The mean time interval between first and follow-up MRM was 8 months for I-IIb lesions, and 4 months for category III lesions. In the longterm follow-up two patients with a category II a lesion developed a carcinoma in a different breast area after four and five years. Conclusion: MRM follow up increases the diagnostic confidence if the time interval is adequate (>4 months). A persistently or increasingly suspicious finding warrants biopsy. (orig.) [de

Wide-diameter locking-taper implants: a prospective clinical study with 1 to 10-year follow-up

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C. Mangano

2014-06-01

Full Text Available Aim: Wide-diameter implants (WDIs, diameter ≥4.5 mm are increasingly being used in patients with poor bone quality and reduced bone height. The aim of this study was to evaluate the survival rate, peri-implant bone loss, biological and prosthetic complications of wide-diameter (4.8 mm locking-taper implants used in the restoration of partially and fully edentulous patients. Materials and methods: Between January 2002 and December 2011, all patients referred to a private clinic for treatment with WDIs were considered for inclusion in the study. At each annual follow-up session, clinical and radiographic parameters were assessed: the outcome measurements were implant failure, peri-implant bone loss (distance between the implant shoulder and the first visible bone-to-implant contact: DIB, biological and prosthetic complications. The cumulative survival rate (CSR was assessed using the Kaplan-Meier estimator; Log-rank was applied to evaluate correlations between the study variables. The statistical analysis was performed at the patient and at the implant level. Results: A total of 438 WDIs were placed in 411 patients. Four implants failed, for a CSR of 99% (patient-based and 99.1% (implant-based at 10-year follow-up. The CSR did not differ significantly with respect to patients’ gender, age, smoking or parafunctional habit, implant location, position, length, bone type or prosthetic restoration. A mean DIB of 0.34 mm (± 0.23, 0.45 mm (± 0.27 and 0.75 mm (± 0.33 was shown at the 1-, 5- and 10-year follow-up examination. Conclusions: Wide-diameter, locking-taper implants can be a good treatment option for the rehabilitation of partially and fully edentulous patients over the long term.

Statistical aspects of tumor registries, Hiroshima and Nagasaki

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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.

Detection of relapse in early stage Hodgkin's disease: role of routine follow up studies

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Torrey, Margaret J; Poen, Joseph C; Hoppe, Richard T

1995-07-01

Purpose: To examine the costs and benefits of an established practice of routine follow-up in a cohort of patients treated with radiation therapy for early stage Hodgkin's disease. Materials and Methods: We retrospectively examined patterns of follow-up and methods of relapse detection among 709 patients with Ann Arbor Stage I-II Hodgkin's disease treated with sub-total lymphoid irradiation (STLI) or total lymphoid irradiation (TLI) between 1969-1994. We determined the probability of relapse detection for each of 7 routine follow up procedures, compared their relative costs, and determined the impact of each procedure on the likelihood of overall survival following salvage therapy. Results: Relapse has occurred in 157 patients (22%) at a median 1.9 years (range 0-13 years) following treatment. 133 relapses (85%) occurred during the first 5 years of follow. Detailed information concerning the method of relapse detection was available on 107 patients. These 107 patients form the basis of this analysis. Relapse was identified by history (Hx) alone in 55% of patients, physical exam (PE) in 14%, chest x-ray (CXR) in 23% and abdominal x-ray (KUB) in 7%. Only one relapse (1%) was identified by a routine laboratory study - erythrocyte sedimentation rate (ESR). The rate of relapse detection was highest for a combination of history and physical exam (78/10,000 exams) followed by CXR (26/10,000 exams), KUB (10/10,000 exams) and ESR (1/10,000 tests). Complete blood count (CBC) and serum chemistries were never the primary factor in detecting HD relapse. Radiographs accounted for greater than 60% of charges while laboratory studies and physician charges accounted for approximately 20% each. The projected charges (1994 dollars) of relapse detection by routine follow up Hx and PE was [dollar]10,600 compared with [dollar]68,200 for CXR, [dollar]141,800 for KUB and [dollar]156,400 for ESR. 10 year actuarial survival following salvage therapy was 65% overall, 65% for patients in whom

Detection of relapse in early stage Hodgkin's disease: role of routine follow up studies

International Nuclear Information System (INIS)

Torrey, Margaret J.; Poen, Joseph C.; Hoppe, Richard T.

1995-01-01

Purpose: To examine the costs and benefits of an established practice of routine follow-up in a cohort of patients treated with radiation therapy for early stage Hodgkin's disease. Materials and Methods: We retrospectively examined patterns of follow-up and methods of relapse detection among 709 patients with Ann Arbor Stage I-II Hodgkin's disease treated with sub-total lymphoid irradiation (STLI) or total lymphoid irradiation (TLI) between 1969-1994. We determined the probability of relapse detection for each of 7 routine follow up procedures, compared their relative costs, and determined the impact of each procedure on the likelihood of overall survival following salvage therapy. Results: Relapse has occurred in 157 patients (22%) at a median 1.9 years (range 0-13 years) following treatment. 133 relapses (85%) occurred during the first 5 years of follow. Detailed information concerning the method of relapse detection was available on 107 patients. These 107 patients form the basis of this analysis. Relapse was identified by history (Hx) alone in 55% of patients, physical exam (PE) in 14%, chest x-ray (CXR) in 23% and abdominal x-ray (KUB) in 7%. Only one relapse (1%) was identified by a routine laboratory study - erythrocyte sedimentation rate (ESR). The rate of relapse detection was highest for a combination of history and physical exam (78/10,000 exams) followed by CXR (26/10,000 exams), KUB (10/10,000 exams) and ESR (1/10,000 tests). Complete blood count (CBC) and serum chemistries were never the primary factor in detecting HD relapse. Radiographs accounted for greater than 60% of charges while laboratory studies and physician charges accounted for approximately 20% each. The projected charges (1994 dollars) of relapse detection by routine follow up Hx and PE was [dollar]10,600 compared with [dollar]68,200 for CXR, [dollar]141,800 for KUB and [dollar]156,400 for ESR. 10 year actuarial survival following salvage therapy was 65% overall, 65% for patients in whom

Efficacy and Safety of Drug-Eluting Stents in the Real World: 8-Year Follow-Up

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Pellegrini, Denise Oliveira, E-mail: dennizmo@yahoo.com.br; Gomes, Vitor Osório; Lasevitch, Ricardo; Smidt, Luis; Azeredo, Marco Aurélio; Ledur, Priscila; Bodanese, Rodrigo; Sinnott, Leonardo; Moriguchi, Emílio; Caramori, Paulo [Hospital São Lucas PUC, Porto Alegre, RS (Brazil)

2014-09-15

Drug-eluting stents have been used in daily practice since 2002, with the clear advantages of reducing the risk of target vessel revascularization and an impressive reduction in restenosis rate by 50%-70%. However, the occurrence of a late thrombosis can compromise long-term results, particularly if the risks of this event were sustained. In this context, a registry of clinical cases gains special value. To evaluate the efficacy and safety of drug-eluting stents in the real world. We report on the clinical findings and 8-year follow-up parameters of all patients that underwent percutaneous coronary intervention with a drug-eluting stent from January 2002 to April 2007. Drug-eluting stents were used in accordance with the clinical and interventional cardiologist decision and availability of the stent. A total of 611 patients were included, and clinical follow-up of up to 8 years was obtained for 96.2% of the patients. Total mortality was 8.7% and nonfatal infarctions occurred in 4.3% of the cases. Target vessel revascularization occurred in 12.4% of the cases, and target lesion revascularization occurred in 8% of the cases. The rate of stent thrombosis was 2.1%. There were no new episodes of stent thrombosis after the fifth year of follow-up. Comparative subanalysis showed no outcome differences between the different types of stents used, including Cypher®, Taxus®, and Endeavor®. These findings indicate that drug-eluting stents remain safe and effective at very long-term follow-up. Patients in the 'real world' may benefit from drug-eluting stenting with excellent, long-term results.

Socioeconomic differences in health check-ups and medically certified sickness absence: a 10-year follow-up among middle-aged municipal employees in Finland.

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Piha, Kustaa; Sumanen, Hilla; Lahelma, Eero; Rahkonen, Ossi

2017-04-01

There is contradictory evidence on the association between health check-ups and future morbidity. Among the general population, those with high socioeconomic position participate more often in health check-ups. The main aims of this study were to analyse if attendance to health check-ups are socioeconomically patterned and affect sickness absence over a 10-year follow-up. This register-based follow-up study included municipal employees of the City of Helsinki. 13 037 employees were invited to age-based health check-up during 2000-2002, with a 62% attendance rate. Education, occupational class and individual income were used to measure socioeconomic position. Medically certified sickness absence of 4 days or more was measured and controlled for at the baseline and used as an outcome over follow-up. The mean follow-up time was 7.5 years. Poisson regression was used. Men and employees with lower socioeconomic position participated more actively in health check-ups. Among women, non-attendance to health check-up predicted higher sickness absence during follow-up (relative risk =1.26, 95% CI 1.17 to 1.37) in the fully adjusted model. Health check-ups were not effective in reducing socioeconomic differences in sickness absence. Age-based health check-ups reduced subsequent sickness absence and should be promoted. Attendance to health check-ups should be as high as possible. Contextual factors need to be taken into account when applying the results in interventions in other settings. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

Improved overall survival after early recurrence of lung cancer following the introduction of CT-based follow-up for patients initially treated with curative intent by (chemo)radiotherapy (CRT)

DEFF Research Database (Denmark)

Hansen, Niels-Chr. G.; Laursen, Christian B.; Jeppesen, Stefan S.

2017-01-01

years after the introduction of CT-based follow-up. The difference between the periods is statistically significant (p = 0.009, log rank test).View this table:Conclusion: The CT-based follow-up program has most likely contributed to the improved survival as the survival difference between the periods......Background: After introduction in July 2010 of follow-up by contrast enhanced CT of thorax and upper abdomen every 3 months for two years and then every 6 months for three years we found improved survival after early recurrence in patients initially treated by surgery (Eur Respir J 2015; 46 suppl...

Interdisciplinary evidence-based recommendations for the follow-up of early stage seminomatous testicular germ cell cancer patients

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Souchon, Rainer [Universitaetsklinikum Tuebingen (Germany). Dept. of Radiation Oncology; Hartmann, Michael [Universitaetskrankenhaus Eppendorf, Hamburg (Germany). Dept. of Urology; Krege, Susanne [Krankenhaus Maria-Hilf GmbH, Krefeld (Germany). Dept. of Urology; Lorch, Anja [Universitaetsklinikum Marburg (Germany). Dept. of Oncology; Mayer, Frank [Universitaetsklinikum Tuebingen (Germany). Dept. of Oncology; Santis, Maria de [KFJ-Spital, ACR-ITR VIEnna/CEADDP and LBI-ACR VIEnna-CTO, Vienna (Austria). Dept. of Oncology; Gillessen, Silke [Kantonsspital St. Gallen (Switzerland). Dept. of Medical Oncology; Beyer, Joerg [Vivantes Klinikum am Urban, Berlin (Germany). Dept. of Hemato-Oncology; Cathomas, Richard [Kantonsspital Graubuenden, Chur (Switzerland). Medical Oncology

2011-03-15

Purpose: To provide guidance regarding follow-up procedures after initial treatment of early stage testicular seminoma (clinical stages (CS) I-II A/B) based on current published evidence complemented by expert opinion. Methods and Material: An interdisciplinary, multinational working group consisting of urologists, medical oncologists, and radiation oncologists analyzed the published evidence regarding follow-up procedures in various stages of seminomatous and nonseminomatous testicular cancers. Focusing on radiooncological aspects, the recommendations contained herein are restricted to early stage seminoma (with radiotherapy being a standard treatment option). In particular, extent, frequency, and duration of imaging at follow-up were analyzed concerning relapse patterns, risk factors, and mode of relapse detection. Results: Active surveillance, adjuvant carboplatin or radiotherapy are equally accepted options for CS I seminoma but they result in different relapse rates and patterns. Usually relapses occur within the first 2(-6) years. Routinely performed follow-up using computerized tomography (CT) after adjuvant treatment yield only low detection rates of recurrences. Therefore, there is no evidence to maintain routine examinations every 3-4 months. After treatment of stage IIA/B, detection rates of relapses or progression identified solely by routinely performed CT during follow-up are low. Conclusion: Considering lifelong cure rates of up to 99% for patients treated for seminoma CS I-IIA/B, the negative impact of unnecessary ionizing radiation exposure has to be considered. The presented recommendations for various follow-up scenarios for early stage seminoma strongly promote the restrictive use of imaging procedures that utilize ionizing radiation (especially CT), due to its potential to induce secondary malignancies. (orig.)

The establishment and utility of Sweha-Reg: a Swedish population-based registry to understand hereditary angioedema

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Werner Sonja

2007-11-01

Full Text Available Abstract Background The importance of acquiring comprehensive epidemiological and clinical data on hereditary angioedema has increasingly caught the attention of physicians and scientists around the world. The development of networks and creation of comprehensive policies to improve care of people suffering from rare diseases, such as hereditary angioedema, is a stated top priority of the European Union. Hereditary angioedema is a rare disease, that it may be life-threatening. Although the exact prevalence is unknown, current estimates suggest that it is 1/10,000–1/150,000 individuals. The low prevalence requires combined efforts to gain accurate epidemiological data on the disease and so give us tools to reduce morbidity and mortality, and improve quality of life of sufferers. Methods Sweha-Reg is a population-based registry of hereditary angioedema in Sweden with the objectives of providing epidemiological data, and so creates a framework for the study of this disease. The registry contains individual-based data on diagnoses, treatments and outcomes. Conclusion The present manuscript seeks to raise awareness of the existence of Sweha-Reg to stimulate the international collaboration of registries. A synthesis of data from similar registries across several countries is required to approach an inclusive course understanding of HAE.

Sarcoidosis in Denmark 1980-1994. A registry-based incidence study comprising 5536 patients

DEFF Research Database (Denmark)

Byg, Keld-Erik; Milman, Nils; Hansen, Stig

2003-01-01

BACKGROUND AND AIM: To evaluate the incidence of sarcoidosis in Denmark 1980-1994. METHODS: Patients with a diagnosis of sarcoidosis were identified from the Danish National Patient Registry. The file contained information about the year in which the diagnosis was reported, gender, age, and resid......BACKGROUND AND AIM: To evaluate the incidence of sarcoidosis in Denmark 1980-1994. METHODS: Patients with a diagnosis of sarcoidosis were identified from the Danish National Patient Registry. The file contained information about the year in which the diagnosis was reported, gender, age......, and residential county. RESULTS: 5536 persons (2816 men) with sarcoidosis were registered. Median age in men was 38 years, in women 45 years. The male/female incidence ratio was 1.06. The incidence (per 100,000 person years) declined gradually from 8.1 in 1980-1984 to 6.4 in 1990-1994. The overall incidence...... (11.0). CONCLUSION: Incidence rates in the present study are lower compared with previous mass-screening surveys showing an incidence rate of 13.8 (in persons examined). Peak incidences occurred at higher ages in both men and women. Previous surveys showed peak incidences at 20-25 years in men...

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

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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.

The Danish National Chronic Myeloid Neoplasia Registry

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Bak M

2016-10-01

Full Text Available Marie Bak,1 Else Helene Ibfelt,2 Thomas Stauffer Larsen,3 Dorthe Rønnov-Jessen,4 Niels Pallisgaard,5 Ann Madelung,6 Lene Udby,1 Hans Carl Hasselbalch,1 Ole Weis Bjerrum,7 Christen Lykkegaard Andersen1,7 1Department of Hematology, Zealand University Hospital, University of Copenhagen, Roskilde, 2Research Centre for Prevention and Health, Rigshospitalet Glostrup, University of Copenhagen, Glostrup, 3Department of Hematology, Odense University Hospital, Odense, 4Department of Hematology, Vejle Hospital, Vejle, 5Department of Surgical Pathology, Zealand University Hospital, University of Copenhagen, Roskilde, 6Department of Surgical Pathology, Zealand University Hospital, University of Copenhagen, Næstved, 7Department of Hematology, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark Aim: The Danish National Chronic Myeloid Neoplasia Registry (DCMR is a population-based clinical quality database, introduced to evaluate diagnosis and treatment of patients with chronic myeloid malignancies. The aim is to monitor the clinical quality at the national, regional, and hospital departmental levels and serve as a platform for research. Study population: The DCMR has nationwide coverage and contains information on patients diagnosed at hematology departments from January 2010 onward, including patients with essential thrombocythemia, polycythemia vera, myelofibrosis, unclassifiable myeloproliferative neoplasms, chronic myelomonocytic leukemia, and chronic myeloid leukemia. Main variables: Data are collected using standardized registration forms (so far up to four forms per patient, which are consecutively filled out online at time of diagnosis, after 2-year and 5-year follow-ups, and at end of follow-up. The forms include variables that describe clinical/paraclinical assessments, treatment, disease progression, and survival – disease-specific variables – as well as variables that are identical for all chronic myeloid malignancies. Descriptive

What do predict anxiety and depression in breast cancer patients? A follow-up study.

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Vahdaninia, Mariam; Omidvari, Sepideh; Montazeri, Ali

2010-03-01

Psychological adjustment following cancer occurrence remains a key issue among the survivors. This study aimed to investigate psychological distress in patients with breast cancer following completion of breast cancer treatments and to determine its associated factors. This was a prospective study of anxiety and depression in breast cancer patients. Anxiety and depression were measured using the Hospital Anxiety and Depression Scale at three points in time: baseline (pre-diagnosis), 3 months after initial treatment and 1 year after completion of treatment (in all 18 months follow-up). At baseline, the questionnaires were administered to all the suspected patients while both patients and the interviewer were blind to the final diagnosis. Socio-demographic and clinical data included age, education, marital status, disease stage and initial treatment. Repeated measure analysis was performed to compare anxiety and depression over the study period. Logistic regression analysis was performed to determine variables that predict anxiety and depression. Altogether 167 patients were diagnosed with breast cancer. The mean age of breast cancer patients was 47.2 (SD = 13.5) years, and the vast majority underwent mastectomy (82.6%). At 18 months follow-up, data for 99 patients were available. The results showed that anxiety and depression improved over the time (P < 0.001) although at 18-month follow-up, 38.4% and 22.2% of the patients presented with severe anxiety and depression, respectively. 'Fatigue' was found to be a risk factor for developing anxiety and depression at 3 months follow-up [odds ratio (OR) = 1.04, 95% Confidence interval (CI) = 1.01-1.07 and OR = 1.04, 95% CI = 1.02-1.07 respectively]. At 18 months follow-up, anxiety was predicted by 'pain' (OR = 1.02, 95% CI = 1.00-1.05), whereas depression was predicted by both 'fatigue' (OR = 1.06, 95% CI = 1.02-1.09) and 'pain' (OR = 1.05, 95% CI = 1.01-1.08). Although the findings indicated that the levels of anxiety and

Design and methodology of a mixed methods follow-up study to the 2014 Ghana Demographic and Health Survey.

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Staveteig, Sarah; Aryeetey, Richmond; Anie-Ansah, Michael; Ahiadeke, Clement; Ortiz, Ladys

2017-01-01

The intended meaning behind responses to standard questions posed in large-scale health surveys are not always well understood. Systematic follow-up studies, particularly those which pose a few repeated questions followed by open-ended discussions, are well positioned to gauge stability and consistency of data and to shed light on the intended meaning behind survey responses. Such follow-up studies require extensive coordination and face challenges in protecting respondent confidentiality during the process of recontacting and reinterviewing participants. We describe practical field strategies for undertaking a mixed methods follow-up study during a large-scale health survey. The study was designed as a mixed methods follow-up study embedded within the 2014 Ghana Demographic and Health Survey (GDHS). The study was implemented in 13 clusters. Android tablets were used to import reference data from the parent survey and to administer the questionnaire, which asked a mixture of closed- and open-ended questions on reproductive intentions, decision-making, and family planning. Despite a number of obstacles related to recontacting respondents and concern about respondent fatigue, over 92 percent of the selected sub-sample were successfully recontacted and reinterviewed; all consented to audio recording. A confidential linkage between GDHS data, follow-up tablet data, and audio transcripts was successfully created for the purpose of analysis. We summarize the challenges in follow-up study design, including ethical considerations, sample size, auditing, filtering, successful use of tablets, and share lessons learned for future such follow-up surveys.

Developing COPD: a 25 year follow up study of the general population

DEFF Research Database (Denmark)

Løkke, Anders; Lange, Peter; Scharling, H

2006-01-01

BACKGROUND: Smokers are more prone to develop chronic obstructive pulmonary disease (COPD) than non-smokers, but this finding comes from studies spanning 10 years or less. The aim of this study was to determine the 25 year absolute risk of developing COPD in men and women from the general...... of men with normal lung function ranged from 96% of never smokers to 59% of continuous smokers; for women the proportions were 91% and 69%, respectively. The 25 year incidence of moderate and severe COPD was 20.7% and 3.6%, respectively, with no apparent difference between men and women. Smoking...... cessation, especially early in the follow up period, decreased the risk of developing COPD substantially compared with continuous smoking. During the follow up period there were 2912 deaths, 109 of which were from COPD. 92% of the COPD deaths occurred in subjects who were current smokers at the beginning...

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

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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

Leukaemia and occupation: a New Zealand Cancer Registry-based case-control Study.

NARCIS (Netherlands)

McLean, D.; 't Mannetje, A.; Dryson, E.; Walls, C.; McKenzie, F.; Maule, M.; Cheng, S.; Cunningham, C.; Kromhout, H.; Boffetta, P.; Blair, A.; Pearce, N.

2009-01-01

BACKGROUND: To examine the association between occupation and leukaemia. METHODS: We interviewed 225 cases (aged 20-75 years) notified to the New Zealand Cancer Registry during 2003-04, and 471 controls randomly selected from the Electoral Roll collecting demographic details, information on

Gene therapy in rare diseases: the benefits and challenges of developing a patient-centric registry for Strimvelis in ADA-SCID.

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Stirnadel-Farrant, Heide; Kudari, Mahesh; Garman, Nadia; Imrie, Jessica; Chopra, Bikramjit; Giannelli, Stefania; Gabaldo, Michela; Corti, Ambra; Zancan, Stefano; Aiuti, Alessandro; Cicalese, Maria Pia; Batta, Rohit; Appleby, Jonathan; Davinelli, Mario; Ng, Pauline

2018-04-06

Strimvelis (autologous CD34+ cells transduced to express adenosine deaminase [ADA]) is the first ex vivo stem cell gene therapy approved by the European Medicines Agency (EMA), indicated as a single treatment for patients with ADA-severe combined immunodeficiency (ADA-SCID) who lack a suitable matched related bone marrow donor. Existing primary immunodeficiency registries are tailored to transplantation outcomes and do not capture the breadth of safety and efficacy endpoints required by the EMA for the long-term monitoring of gene therapies. Furthermore, for extended monitoring of Strimvelis, the young age of children treated, small patient numbers, and broad geographic distribution of patients all increase the risk of loss to follow-up before sufficient data have been collected. Establishing individual investigator sites would be impractical and uneconomical owing to the small number of patients from each location receiving Strimvelis. An observational registry has been established to monitor the safety and effectiveness of Strimvelis in up to 50 patients over a minimum of 15 years. To address the potential challenges highlighted above, data will be collected by a single investigator site at Ospedale San Raffaele (OSR), Milan, Italy, and entered into the registry via a central electronic platform. Patients/families and the patient's local physician will also be able to submit healthcare information directly to the registry using a uniquely designed electronic platform. Data entry will be monitored by a Gene Therapy Registry Centre (funded by GlaxoSmithKline) who will ensure that necessary information is collected and flows between OSR, the patient/family and the patient's local healthcare provider. The Strimvelis registry sets a precedent for the safety monitoring of future gene therapies. A unique, patient-focused design has been implemented to address the challenges of long-term follow-up of patients treated with gene therapy for a rare disease. Strategies to

Factors associated with intentions to adhere to colorectal cancer screening follow-up exams

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Ishibashi Teruo

2006-11-01

Full Text Available Abstract Background To increase adherence rate to recommendations for follow-up after abnormal colorectal cancer (CRC screening results, factors that inhibit and facilitate follow-up must be identified. The purpose of this study was to identify the factors associated with intention to adhere to CRC screening follow-up exams. Methods During a 4-week period in October 2003, this survey was conducted with 426 subjects participating in a community-based CRC screening program in Nagano, Japan. Study measures included intention to adhere to recommendation for clinical follow-up in the event of an abnormal fecal occult blood test (FOBT result, perceived susceptibility and severity of CRC, perceived benefits and barriers related to undergoing follow-up examination, social support, knowledge of CRC risk factors, health status, previous CRC screening, personality and social demographic characteristics. Univariate and multivariate logistic regression analyses on intention to adhere to recommendations for follow-up were performed. Results Among the 288 individuals analyzed, approximately 74.7% indicated that they would definitely adhere to recommendations for follow-up. After controlling for age, gender, marital status, education, economic status, trait anxiety, bowel symptoms, family history of CRC, and previous screening FOBT, analyses revealed that lower levels of perceived barriers, higher levers of perceived benefits and knowledge of CRC risk factors were significantly associated with high intention respectively. Conclusion The results of this study suggest that future interventions should focus on reducing modifiable barriers by clarifying misperceptions about follow-up, promoting the acceptance of complete diagnostic evaluations, addressing psychological distress, and making follow-up testing more convenient and accessible. Moreover, educating the public regarding the risk factors of CRC and increasing understanding of the benefits of follow-up is

Structured nursing follow-up: does it help in diabetes care?

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Shani, Michal; Nakar, Sasson; Lustman, Alex; Lahad, Amnon; Vinker, Shlomo

2014-01-01

In 1995 Clalit Health Services introduced a structured follow-up schedule, by primary care nurses, of diabetic patients. This was supplementary care, given in addition to the family physician's follow-up care. This article aims to describe the performance of diabetes follow-up and diabetes control in patients with additional structured nursing follow-up care, compared to those patients followed only by their family physician. We randomly selected 2,024 type 2 diabetic subjects aged 40-76 years. For each calendar year, from 2005-2007, patients who were "under physician follow-up only" were compared to those who received additional structured nursing follow-up care. Complete diabetes follow-up parameters including: HbA1c, LDL cholesterol, microalbumin, blood pressure measurements and fundus examination. The average age of study participants was 60.7 years, 52% were females and 38% were from low socioeconomic status (SES). In 2005, 39.5% of the diabetic patients received structured nursing follow-up, and the comparable figures for 2006 and 2007 were 42.1% 49.6%, respectively. The intervention subjects tended to be older, from lower SES, suffered from more chronic diseases and visited their family physician more frequently than the control patients. Patients in the study group were more likely to perform a complete diabetes follow-up plan: 52.8% vs. 21.5% (2005; p nursing follow-up care were more likely to perform complete diabetes follow-up protocol. Our results reinforce the importance of teamwork in diabetic care. Further study is required to identify strategies for channeling the use of the limited resources to the patients who stand to benefit the most.

Comfort monitoring? Environmental assessment follow-up under community-industry negotiated environmental agreements

International Nuclear Information System (INIS)

Noble, Bram; Birk, Jasmine

2011-01-01

Negotiated environmental agreements are becoming common practice in the mining industry. In principle, negotiated environmental agreements are said to respond to many of the shortcomings of environmental impact assessment by providing for improved follow-up of project impacts through, among other things, data provision, engaging stakeholders in the monitoring and management of project impacts, and building capacity at the local level to deal with project-induced environmental change. In practice, however, little is known about the efficacy of follow-up under negotiated environmental agreements between proponents and communities and the demonstrated value added to project impact management. This paper examines follow-up practice under negotiated environmental agreements with a view to understanding whether and how community-based monitoring under privatized agreements actually contributes to improved follow-up and impact management. Based on lessons emerging from recent experiences with environmental agreements in Canada's uranium industry, we show that follow-up under negotiated agreements may be described as 'comfort monitoring'. While such monitoring does improve community-industry relations and enhance corporate image, it does little to support effects-based management. If follow-up under negotiated agreements is to be credible over the long term, there is a need to ensure that monitoring results are useful for, and integrated with, regulatory-based monitoring and project impact management practices.

Review of retention strategies in longitudinal studies and application to follow-up of ICU survivors.

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Tansey, Catherine M; Matté, Andrea L; Needham, Dale; Herridge, Margaret S

2007-12-01

To review the literature on retention strategies in follow-up studies and their relevance to critical care and to comment on the Toronto experience with the acute respiratory distress syndrome (ARDS) and severe acute respiratory syndrome (SARS) follow-up studies. Literature review and two cohort studies in a tertiary care hospital in Toronto, Canada. ARDS and SARS patients. Review articles from the social sciences and medicine are summarized and our own experience with two longitudinal studies is drawn upon to elucidate strategies that can be successfully used to attenuate participant drop-out from longitudinal studies. Three key areas for retention of subjects are identified from the literature: (a) respect for patients: respect for their ideas and their time commitment to the research project; (b) tracking: collect information on many patient contacts at the initiation of the study and outline tracking procedures for subjects lost to follow-up; and (c) study personnel: interpersonal skills must be reinforced, flexible working hours mandated, and support offered. Our 5-year ARDS and 1-year SARS study retention rates were 86% and 91%, respectively, using these methods. Strategies to reduce patient attrition are time consuming but necessary to preserve internal and external validity. When the follow-up system is working effectively, researchers can acquire the necessary data to advance knowledge in their field and patients are satisfied that they have an important role to play in the research project.

Current concepts in clinical research: web-based, automated, arthroscopic surgery prospective database registry.

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Lubowitz, James H; Smith, Patrick A

2012-03-01

In 2011, postsurgical patient outcome data may be compiled in a research registry, allowing comparative-effectiveness research and cost-effectiveness analysis by use of Health Insurance Portability and Accountability Act-compliant, institutional review board-approved, Food and Drug Administration-approved, remote, Web-based data collection systems. Computerized automation minimizes cost and minimizes surgeon time demand. A research registry can be a powerful tool to observe and understand variations in treatment and outcomes, to examine factors that influence prognosis and quality of life, to describe care patterns, to assess effectiveness, to monitor safety, and to change provider practice through feedback of data. Registry of validated, prospective outcome data is required for arthroscopic and related researchers and the public to advocate with governments and health payers. The goal is to develop evidence-based data to determine the best methods for treating patients. Copyright © 2012 Arthroscopy Association of North America. Published by Elsevier Inc. All rights reserved.

Economic Recession Affects Gambling Participation But Not Problematic Gambling: Results from a Population-Based Follow-up Study

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Daniel T. Olason

2017-07-01

Full Text Available In October 2008, Iceland experienced the fastest and deepest financial crisis recorded in modern times when all three major banks went bankrupt in less than 2 weeks. The purpose of this follow-up study is to examine potential changes in participation in 12 different gambling types and in problem gambling before (time 1; year 2007 and after (time 2; year 2011 the economic collapse in 2008. The time between the first and second wave of data collection was 3.5 years. In total, 1,531 participants took part in the study, 688 males and 843 females. There was a considerable increase in past year gambling behavior from 2007 to 2011, mostly due to increased participation in lotto (National lotto and Viking lotto but also in bingo, monthly lotteries (class lotteries with at least monthly draw and scratch tickets. Only EGMs (electronic gaming machines participation declined significantly between the two timepoints. Examining past year problematic gambling figures revealed that there were no changes in the prevalence figures between the year 2007 (1.2% and 2011 (1.1%. Further examination revealed that those who reported financial difficulties due to the recession were more likely to buy lotto- or scratch tickets during the recession than those who were not financially affected by the crisis. These findings remained after controlling for background variables and baseline gambling activity (gambling in 2007. Overall, the findings of the follow-up study suggest that when people are experiencing financial difficulties during economic recessions, the possibility to improve their financial situation by winning large jackpots with low initial stakes becomes more enticing.

Primary-care-based episodes of care and their costs in a three-month follow-up in Finland.

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Heinonen, J; Koskela, T H; Soini, E; Ryynänen, O P

2015-01-01

To explore patient characteristics, resource use, and costs related to different episodes of care (EOC) in Finnish health care. Data were collected during a three-month prospective, non-randomized follow-up study (Effective Health Centre) using questionnaires and an electronic health record. Three primary health care practices in Pirkanmaa, Finland. Altogether 622 patients were recruited during a one-week period. Inclusion criteria: the patient had a doctor's or nurse's appointment on the recruiting day and agreed to participate. Exclusion criteria: patients visiting a specialized health guidance clinic for pregnant women, children, and mothers. Patient characteristics, resource use, and costs based on the ICPC-2 EOC classification. On average, the patients had 1.22 EOCs during the three months. Patient characteristics and resource use differed between the EOC chapters. Chapter L, "Musculoskeletal", had the most episodes (17%). The most common (8%) single EOC was "upper respiratory infection". The mean cost of an episode (COE) was €389.56 (standard error 61.11) and the median COE was €165.00 (interquartile range €118.46-288.56) during the three-month follow-up. The most expensive chapter was K, "Circulatory", with a mean COE of €909.85. The most expensive single COE was in chapter K, €32 545.56. The most expensive 1% of the COEs summed up covered 36% of the total COEs. Patient characteristics, resource use, and costs differed between the ICPC-2 chapters, which could be taken into account in service planning and pricing. Future studies should incorporate more specific diagnoses, larger data sets, and longer follow-up times. Key points The most common episodes were under the ICPC-2 "Musculoskeletal" chapter, but the highest mean and single-episode costs were related to the "Circulatory" chapter. The mean (median) cost of episodes that started in primary care was €390 (€165) during the three-month follow-up. Patient characteristics, resource use, and

[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.

National screening program vs. standardized neurodevelopmental follow-up

NARCIS (Netherlands)

Maschke, Cornelia; Ellenrieder, Birte; Hecher, Kurt; Bartmann, Peter

Background: Long-term follow-up is urgently needed to decide on the consequences of new therapies. Objective: This study assesses the use of a national child development screening program for a follow-up examination of a defined patient group. Patients and methods: Neurodevelopmental outcome of 139

Follow-Up Testing

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... second should occur after 1 year on the gluten-free diet. After that, a celiac should receive follow-up ... test result is straightforward—a celiac on the gluten-free diet should have a negative test. The numerical value ...

Dementia and traffic accidents: a Danish register-based cohort study

DEFF Research Database (Denmark)

Petersen, Jindong Ding; Siersma, Volkert Dirk; Nielsen, CT

2016-01-01

BACKGROUND: As a consequence of a rapid growth of an ageing population, more people with dementia are expected on the roads. Little is known about whether these people are at increased risk of road traffic-related accidents. OBJECTIVE: Our study aims to investigate the risk of road traffic...... Central Research Register, and/or (2) at least one dementia diagnosis-related drug prescription registration in the Danish National Prescription Registry. Police-, hospital-, and emergency room-reported road traffic-related accidents occurred within the study follow-up are defined as the study outcome...... selection bias due to nonparticipation and loss to follow-up. Furthermore, this ensures that the study results are reliable and generalizable. However, underreporting of traffic-related accidents may occur, which will limit estimation of absolute risks....

Follow-up care of children suffered from burns

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Konstantin Aleksandrovich Afonichev

2015-03-01

Full Text Available Outcomes of III-VI AB degree burns in children,regardless of the nature of treatment in the acute andrecovery period, are the development of scar contractures and deformities of the joints. However, thecorrect organization of follow-up care and rehabilitation treatment can significantly reduce the severity and facilitates the full recovery of the affected segment. Based on the analysis of their own material, the author defines the early stage of rehabilitation in these patients before full maturation of scar tissue or before the formation of functionally significant joint contractures, and later period, when there are indications for surgical rehabilitation. In the early period, follow-up care is recommended in 1 month after discharge and then on a quarterly basis, and with the appearance of deformities - at least once in 2 months. At the2nd stage of rehabilitation, older children and children of secondary school age are subject to follow-up care at least 1 time per year of primary school age - atleast once in 6 months, preschool children - every3 months. The proposed assessment of scar tissuehelps to determine the terms of follow-up care. Usingthis scheme of follow-up care and appropriate treatment allowed the author to obtain excellent and goodresults in 87-90 % of cases at the stages of rehabilitaion.

The impact of a model-based clinical regional registry for attention-deficit hyperactivity disorder.

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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.

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).

EHR-based disease registries to support integrated care in a health neighbourhood: an ontology-based methodology.

Science.gov (United States)

Liaw, Siaw-Teng; Taggart, Jane; Yu, Hairong

2014-01-01

Disease registries derived from Electronic Health Records (EHRs) are widely used for chronic disease management. We approached registries from the perspective of integrated care in a health neighbourhood, considering data quality issues such as semantic interoperability (consistency), accuracy, completeness and duplication. Our proposition is that a realist ontological approach is required to accurately identify patients in an EHR or data repository, assess data quality and fitness for use by the multidisciplinary integrated care team. We report on this approach with routinely collected data in a practice based research network in Australia.

Immunological follow-up of hydatid cyst cases

Directory of Open Access Journals (Sweden)

Bulut Vedat

2001-01-01

Full Text Available Hydatid disease is caused by Echinococcus granulosus. In this study, we aimed to investigate the benefit of monitoring cases with hydatid cyst by means of immune components in patients in a long-term follow-up after surgery. Eighty-four preoperative and postoperative serum samples from 14 cases undergoing surgery for hydatid disease were evaluated in terms of immune parameters, such as total and specific IgE, IgG, IgM, IgA and complement. Total and specific IgE were determined by ELISA. Specific IgG levels were measured by indirect hemaglutination.Total IgG, IgM, IgA and complement (C3 and C4 were detected by nephelometry. Imaging studies were also carried out during the follow-up. In none of the patients hydatid cysts were detected during the follow-up. Total IgE levels in the sera of the patients decreased to normal six months after surgery. Although specific IgE against echinococcal antigens decreased one year after operation, levels were still significantly high. There were no changes in the levels of anti-Echinococcus IgG and total IgG in follow-up period. Additionally, other parameters, such as IgA, IgM, C3 and C4, were not affected.

Patient relationship management: an overview and study of a follow-up system.

Science.gov (United States)

Oinas-Kukkonen, Harri; Räisänen, Teppo; Hummastenniemi, Niko

2008-01-01

Customer relationship management research is utilized to explain the need for a more patient-oriented support in patient care. This article presents a European study on how various hospital units of a single healthcare organization have utilized a patient relationship management system--in particular a patient treatment follow-up system--and how it affects patient care and the knowledge work performed by the medical staff. Eight physicians were interviewed at a university hospital on whether patient treatment was improved through a follow-up system that had been in use in the case organization for three years. The interviewees represented various hospital units, and all of them had used the system at their own unit. The results indicate that it is possible to improve patient care through more personalized treatment. The follow-up treatment system seems to be a tool to create and maintain better communication with the patients rather than just a technological solution. It may help better understand and analyze both individual patients and patient groups. For individual physicians it provides a way to reflect professional skills. The system was lacking in its support for one-to-one communication with patients. Nevertheless, the system is an example of patient relationship management which may help healthcare units to move towards a more patient-oriented care.

Serum thyroglobulin before and after iodization of salt: an 11-year DanThyr follow-up study

DEFF Research Database (Denmark)

Krejbjerg, Anne; Bjergved, Lena; Pedersen, Inge Bülow

2015-01-01

(moderate iodine deficiency (ID)) and Copenhagen (mild ID). Participants were examined at baseline (1997) before the mandatory IF of salt (2000) and again at follow-up (2008) after IF. We examined 2465 adults and a total of 1417 participants with no previous thyroid disease and without Tg......Our objective was to investigate individual serum thyroglobulin (Tg) changes in relation to iodine fortification (IF) and to clarify possible predictors of these changes. We performed a longitudinal population-based study (DanThyr) in two regions with different iodine intake at baseline: Aalborg......-autoantibodies were included in the analyses. Serum Tg was measured by immunoradiometric method. We registered participants with a daily intake of iodine from supplements in addition to IF. Overall, the follow-up period saw no change in median Tg in Copenhagen (9.1/9.1 μg/l, P=0.67) while Tg decreased significantly...

Analytical framework and tool kit for SEA follow-up

International Nuclear Information System (INIS)

Nilsson, Mans; Wiklund, Hans; Finnveden, Goeran; Jonsson, Daniel K.; Lundberg, Kristina; Tyskeng, Sara; Wallgren, Oskar

2009-01-01

Most Strategic Environmental Assessment (SEA) research and applications have so far neglected the ex post stages of the process, also called SEA follow-up. Tool kits and methodological frameworks for engaging effectively with SEA follow-up have been conspicuously missing. In particular, little has so far been learned from the much more mature evaluation literature although many aspects are similar. This paper provides an analytical framework and tool kit for SEA follow-up. It is based on insights and tools developed within programme evaluation and environmental systems analysis. It is also grounded in empirical studies into real planning and programming practices at the regional level, but should have relevance for SEA processes at all levels. The purpose of the framework is to promote a learning-oriented and integrated use of SEA follow-up in strategic decision making. It helps to identify appropriate tools and their use in the process, and to systematise the use of available data and knowledge across the planning organization and process. It distinguishes three stages in follow-up: scoping, analysis and learning, identifies the key functions and demonstrates the informational linkages to the strategic decision-making process. The associated tool kit includes specific analytical and deliberative tools. Many of these are applicable also ex ante, but are then used in a predictive mode rather than on the basis of real data. The analytical element of the framework is organized on the basis of programme theory and 'DPSIR' tools. The paper discusses three issues in the application of the framework: understanding the integration of organizations and knowledge; understanding planners' questions and analytical requirements; and understanding interests, incentives and reluctance to evaluate

Epidemiological follow-up study of Japanese Thorotrast cases

International Nuclear Information System (INIS)

Mori, T.; Maruyama, T.; Kato, Y.; Takahashi, S.

1979-01-01

The authors conducted a follow-up study on 243 Thorotrast-administered war-wounded ex-servicemen in 1975, after a lapse of 30 to 38 years from Thorotrast injections, and found 18 cases of malignant hepatic tumor, 15 cases of other malignant tumors, 2 cases of blood diseases, and 9 cases of liver cirrhosis in 224 cases who had been given Thorotrast intravascularly. The incidence of hepatic and other malignant tumors, blood diseases, and liver cirrhosis was significantly higher than in the controls. The total number of deaths in the Thorotrast-administered cases was also significantly higher than in the controls. In the remaining 19 cases who had been given Thorotrast by a route other than intravascularly, no fatal case related to Thorotrast administration was discovered. In the living cases, however, one sarcoma was observed to have developed at the site of the Thorotrast injection

A Shandon PapSpin liquid-based gynecological test: A split-sample and direct-to-vial test with histology follow-up study

Directory of Open Access Journals (Sweden)

Rimiene J

2010-01-01

Full Text Available Background: Studies for liquid-based Papanicolaou (Pap tests reveal that liquid-based cytology (LBC is a safe and effective alternative to the conventional Pap smear. Although there is research on ThinPrep and SurePath systems, information is lacking to evaluate the efficiency and effectiveness of systems based on cytocentrifugation. This study is designed to determine the sensitivity and specificity of the Shandon PapSpin (ThermoShandon, Pittsburgh, Pennsylvania, USA liquid-based gynecological system. We used split-sample and direct-to-vial study design. Materials and Methods: 2,945 women referred to prophylactic check-up were enrolled in this study. Split sample design was used in 1,500 women and residual cervical cytology specimen from all these cases was placed in fluid for PapSpin preparation after performing conventional smear. The direct-to-vial study was carried out in another cohort of 1,445 women in whom the entire cervical material was investigated using only the PapSpin technique. Follow up histological diagnoses for 141 women were obtained from both study arms following 189 abnormal cytology cases. 80 LBC cases from the split sample group and 61 LBC cases in the direct-to-vial group were correlated with the histology results. The sensitivity and secificity of the conventional smear and PapSpin tests in both study arms were compared. Results: In the split sample group, conventional smears showed a higher proportion of ASC-US (atypical cells undetermined significance: 31 (2.1% vs 10 (0.7% in PapSpin (P = 0.001. A higher proportion of unsatisfactory samples was found in the conventional smear group: 25 (1.7% vs 6 (0.4% cases (P = 0.001. In the split sample group, the sensitivity of the conventional and PapSpin tests was 68.7% vs 78.1%, and the specificity 93.8% vs 91.8%, respectively. In the direct to vial group PapSpin sensitivity was 75.9% and specificity 96.5%. The differences in sensitivity and specificity were not significant. The

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.

Hematological follow-up studies on patients with thyroid neoplasms after 131I therapy

International Nuclear Information System (INIS)

Chone, B.; Engelken, G.; Schenck, P.

1978-01-01

Based on 391 thyroid neoplasms diagnostic hematological follow-up studies were registered in 34 patients with an overall J-131-dose of more than 500 mCi including the following parameters: 1. Peripheral blood control. 2. Bone marrow aspiration. 3. Cell volume distribution size of leukocytes after preparative enrichment. If in doubt a bone marrow scintigraphy was added. The adjunctive diagnostic procedure was correlated with histological criteria of thyroid carcinoma and J-131 retention after therapeutic application of radioiodine. In particular, a case report is given regarding a patient of 66 years with follicular thyroid carcinoma receiving 990 mCi J-131 during a period of 11 years after having had total thyroidectomy twice. The development of acute leucemia followed by death happened 16 years later. The moment of bone marrow transformation was determined exactly. The value of blood parameters can be calculated as follows: 1. Peripheral blood controls are limited by lack of efficiency. 2. Biopsy of bone marrow can detect hypoplastic alteration being latent in circulating blood for some years, even of J-131 cumulation dose below 500 mCi. 3. The analysis of distribution size of leukocytes represents a functional aspect after radiation induced in injury of bone marrow. (author)