Full Text Available Abstract Background The EuroCMR registry sought to evaluate indications, image quality, safety and impact on patient management of clinical routine CMR in a multi-national European setting. Furthermore, interim analysis of the specific protocols should underscore the prognostic potential of CMR. Methods Multi-center registry with consecutive enrolment of patients in 57 centers in 15 countries. More than 27000 consecutive patients were enrolled. Results The most important indications were risk stratification in suspected CAD/Ischemia (34.2%, workup of myocarditis/cardiomyopathies (32.2%, as well as assessment of viability (14.6%. Image quality was diagnostic in more than 98% of cases. Severe complications occurred in 0.026%, always associated with stress testing. No patient died during or due to CMR. In 61.8% CMR findings impacted on patient management. Importantly, in nearly 8.7% the final diagnosis based on CMR was different to the diagnosis before CMR, leading to a complete change in management. Interim analysis of suspected CAD and risk stratification in HCM specific protocols revealed a low rate of adverse events for suspected CAD patients with normal stress CMR (1.0% per year, and for HCM patients without LGE (2.7% per year. Conclusion The most important indications in Europe are risk stratification in suspected CAD/Ischemia, work-up of myocarditis and cardiomyopathies, as well as assessment of viability. CMR imaging is a safe procedure, has diagnostic image quality in more than 98% of cases, and its results have strong impact on patient management. Interim analyses of the specific protocols underscore the prognostic value of clinical routine CMR in CAD and HCM. Condensed abstract The EuroCMR registry sought to evaluate indications, image quality, safety and impact on patient management of clinical routine CMR in a multi-national European setting in a large number of cases (n > 27000. Based on our data CMR is frequently performed in
Bruder, Oliver; Wagner, Anja; Lombardi, Massimo; Schwitter, Jürg; van Rossum, Albert; Pilz, Günter; Nothnagel, Detlev; Steen, Henning; Petersen, Steffen; Nagel, Eike; Prasad, Sanjay; Schumm, Julia; Greulich, Simon; Cagnolo, Alessandro; Monney, Pierre; Deluigi, Christina C; Dill, Thorsten; Frank, Herbert; Sabin, Georg; Schneider, Steffen; Mahrholdt, Heiko
The EuroCMR registry sought to evaluate indications, image quality, safety and impact on patient management of clinical routine CMR in a multi-national European setting. Furthermore, interim analysis of the specific protocols should underscore the prognostic potential of CMR. Multi-center registry with consecutive enrolment of patients in 57 centers in 15 countries. More than 27000 consecutive patients were enrolled. The most important indications were risk stratification in suspected CAD/Ischemia (34.2%), workup of myocarditis/cardiomyopathies (32.2%), as well as assessment of viability (14.6%). Image quality was diagnostic in more than 98% of cases. Severe complications occurred in 0.026%, always associated with stress testing. No patient died during or due to CMR. In 61.8% CMR findings impacted on patient management. Importantly, in nearly 8.7% the final diagnosis based on CMR was different to the diagnosis before CMR, leading to a complete change in management. Interim analysis of suspected CAD and risk stratification in HCM specific protocols revealed a low rate of adverse events for suspected CAD patients with normal stress CMR (1.0% per year), and for HCM patients without LGE (2.7% per year). The most important indications in Europe are risk stratification in suspected CAD/Ischemia, work-up of myocarditis and cardiomyopathies, as well as assessment of viability. CMR imaging is a safe procedure, has diagnostic image quality in more than 98% of cases, and its results have strong impact on patient management. Interim analyses of the specific protocols underscore the prognostic value of clinical routine CMR in CAD and HCM.
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.
Kisitu, Dan K; Eyler, Lauren E; Kajja, I; Waiswa, G; Beyeza, T; Feldhaus, Isabelle; Juillard, Catherine; Dicker, Rochelle A
Musculoskeletal injuries are a major public health problem in low-income countries like Uganda. Patterns of musculoskeletal injuries presenting to district hospitals are unknown. Our pilot orthopedic trauma registry establishes a framework for broader district hospital injury surveillance. We interviewed and examined patients presenting to Mityana, Entebbe, and Nakaseke hospitals with musculoskeletal injuries from October 2013 to January 2014. We compared patient and Demographic and Health Survey population demographics and determined predictors of delayed presentation for care. Men, adults, and individuals with postsecondary education were more common among patients than in the Demographic and Health Survey population. Common causes included road traffic injuries (48.5%) and falls (25.1%). Closed, simple fractures comprised 70% of injuries. Compared to the self-employed, subsistence farmers (odds ratio [OR] = 2.99, 95% confidence interval [CI] = 1.15-7.91), motorcycle taxi drivers (OR = 10.50, 95% CI = 1.92-64.57), and preschool children (OR = 4.24, 95% CI = 1.05-17.39) were significantly more likely to be delayed to care after adjustment for covariates. Subsistence farmers were more likely than other occupations to seek care from traditional bonesetters (23% versus 7%, P = 0.001). All patients who visited bonesetters were delayed to hospital care. Policies for trauma systems strengthening must address the needs of underserved groups and involve all stakeholders, including bonesetters. Research should address reasons for delayed care among subsistence farmers, motorcycle taxi drivers, and preschool children. Injury surveillance at district hospitals facilitates evidence-based resource allocation and should continue in the form of an Ugandan national trauma registry. Copyright © 2015 Elsevier Inc. All rights reserved.
Chico-Fernández, M; Llompart-Pou, J A; Guerrero-López, F; Sánchez-Casado, M; García-Sáez, I; Mayor-García, M D; Egea-Guerrero, J; Fernández-Ortega, J F; Bueno-González, A; González-Robledo, J; Servià-Goixart, L; Roldán-Ramírez, J; Ballesteros-Sanz, M Á; Tejerina-Alvarez, E; García-Fuentes, C; Alberdi-Odriozola, F
To describe the characteristics and management of severe trauma disease in Spanish Intensive Care Units (ICUs). Registry of trauma in the ICU (RETRAUCI). Pilot phase. A prospective, multicenter registry. Thirteen Spanish ICUs. Patients with trauma disease admitted to the ICU. None. Epidemiology, out-of-hospital attention, registry of injuries, resources utilization, complications and outcome were evaluated. Patients, n=2242. Mean age 47.1±19.02 years. Males 79%. Blunt trauma 93.9%. Injury Severity Score 22.2±12.1, Revised Trauma Score 6.7±1.6. Non-intentional in 84.4% of the cases. The most common causes of trauma were traffic accidents followed by pedestrian and high-energy falls. Up to 12.4% were taking antiplatelet medication or anticoagulants. Almost 28% had a suspected or confirmed toxic influence in trauma. Up to 31.5% required an out-of-hospital artificial airway. The time from trauma to ICU admission was 4.7±5.3hours. At ICU admission, 68.5% were hemodynamically stable. Brain and chest injuries predominated. A large number of complications were documented. Mechanical ventilation was used in 69.5% of the patients (mean 8.2±9.9 days), of which 24.9% finally required a tracheostomy. The median duration of stay in the ICU and in hospital was 5 (range 3-13) and 9 (5-19) days, respectively. The ICU mortality rate was 12.3%, while the in-hospital mortality rate was 16.0%. The pilot phase of the RETRAUCI offers a first impression of the epidemiology and management of trauma disease in Spanish ICUs. Copyright © 2015 Elsevier España, S.L.U. y SEMICYUC. All rights reserved.
Belcaro, Gianni; Dugall, Mark; Hu, Shu; Ledda, Andrea; Ippolito, Edmondo
The aim of this pilot supplement study was the evaluation of an oak wood extract (Robuvit, Quercus robur [QR], Horphag Research) in an 8-week registry study on lymphatic signs in primary lymphedema. Subjects with primary lymphedema confined to a single leg without skin changes or ulcerations were followed for at least 8 weeks. Lymphedema was mainly present distally (below the knee). Three groups were formed: one group used only the standard management for lymphedema; one used the same management plus 300 mg Robuvit; and one used the standard management plus 600 mg of Robuvit. The three groups were comparable. After 8 weeks the variation in leg volume was on average −6.2% with standard management, −15% in the QR 300 mg group, and −18.9% in the 600 mg group. The edema score was also significantly lower at 8 weeks in the two QR groups. The variation in proteins in the interstitial fluid in comparison with initial values was −14.8% in controls in comparison with −29.9% in QR 300 mg group and −36.9% in QR 600 mg group. Skin flux significantly improved (increased) in the two QR groups. Ultrasound pretibial skin thickness was decreased on average 6% in controls versus 10.3% in the low-dose QR group and 11.8% in the higher dose group. Perimalleolar thickness was decreased 7% in controls and more in the two QR groups. Ankle circumference was decreased 4.4% in controls and more in the two supplement groups. This pilot registry indicates that Robuvit can be effective in the management of primary lymphedema. More patients and longer evaluation periods are needed. PMID:25780327
Bücking, Benjamin; Hartwig, Erich; Nienaber, Ulrike; Krause, Ulla; Friess, Thomas; Liener, Ulrich; Hevia, Maria; Bliemel, Christopher; Knobe, Matthias
Since 2014, hospitals with ortho-geriatric fracture centres could be certified as AltersTraumaZentrum DGU® in Germany. To measure the quality of treatment in these centres, a geriatric trauma registry (AltersTraumaRegister DGU®) was established. The aim of this work was to report the results of the pilot phase of the AltersTraumaRegister DGU® from the year 2015. Included were 118 patients >70 years with hip fracture or implant-related femoral fractures. Apart from other parameters, the point of surgery, initiation of anti-osteoporotic treatment and the EQ-5D one week post-surgery was measured. Surgery was performed in 87% of patients within 24 h. Specific osteoporotic therapy could be increased from 4 to 63 patients. The EQ-5D was strongly restricted to one week post-surgery. Based on the timing of surgery and anti-osteoporotic therapy, the treatment seems to be successful in the ortho-geriatric fracture centres. For a better evaluation of treatment quality in the AltersTraumaZentren DGU®, implementation of follow-up examinations in the AltersTraumaRegister DGU® is essential.
Elliott, Perry; Charron, Philippe; Blanes, Juan Ramon Gimeno; Tavazzi, Luigi; Tendera, Michal; Konté, Marème; Laroche, Cécile; Maggioni, Aldo P
Cardiomyopathies are a heterogeneous group of disorders associated with premature death due to ventricular arrhythmia or heart failure. The purpose of this study was to examine the characteristics of patients enrolled in the pilot phase of the EURObservational Research Programme (EORP) cardiomyopathy registry. Between 1 December 2012 and 30 November 2013, four cardiomyopathy phenotypes were studied: hypertrophic cardiomyopathy (HCM), dilated cardiomyopathy (DCM), arrhythmogenic right ventricular cardiomyopathy (ARVC), and restrictive cardiomyopathy (RCM). Twenty-seven centres in 12 countries participated; 1115 patients were enrolled. The commonest cardiomyopathy was HCM (n = 681), followed by DCM (n = 346), ARVC (n = 59), and RCM (n = 29); 423 patients (46.4% of those reported) had familial disease; and 56 (5.0%) had rare disease phenocopies. Median age at enrolment and diagnosis was 54 [interquartile range (IQR), 42-64] and 46 years (IQR, 32-58), respectively; fewer patients with ARVC and more with RCM were diagnosed in the upper age quartile (P cardiomyopathies except RCM (P = 0.0023). Most patients were in New York Heart Association functional class I (n = 813) at enrolment; 139 (12.5%) reported syncope, most frequently in ARVC (P = 0.0009). Five hundred and seven (45.5%) patients underwent cardiac magnetic resonance imaging, 117 (10.6%) endomyocardial biopsy, and 462 (41.4%) genetic testing with a causative mutation reported in 236 individuals (51.1%). 1026 patients (92.0%) were receiving drug therapy; 316 (28.3%) had received an implantable cardioverter defibrillator (highest proportion in ARVC, P cardiomyopathy are complex, requiring access to a large range of invasive and non-invasive investigations and involvement of multidisciplinary teams. Treatment regimens are equally multifaceted and show that patients are likely to need long-term follow-up in close liaison with expert centres. Published on behalf of the European Society of Cardiology. All rights
Johnson, L; Bhutani, V K; Karp, K; Sivieri, E M; Shapiro, S M
To identify antecedent clinical and health services events in infants (>/=35 weeks gestational age (GA)) who were discharged as healthy from their place of birth and subsequently sustained kernicterus. We conducted a root-cause analysis of a convenience sample of 125 infants >/=35 weeks GA cared for in US healthcare facilities (including off-shore US military bases). These cases were voluntarily reported to the Pilot USA Kernicterus Registry (1992 to 2004) and met the eligibility criteria of acute bilirubin encephalopathy (ABE) and/or post-icteric sequelae. Multiple providers at multiple sites managed this cohort of infants for their newborn jaundice and progressive hyperbilirubinemia. Clinical signs of ABE, verbalized by parents, were often inadequately elicited or recorded and often not recognized as an emergency. Clinical signs of ABE were reported in 7 of 125 infants with a subsequent diagnosis of kernicterus who were not re-evaluated or treated for hyperbilirubinemia, although jaundice was noted at outpatient visits. The remaining infants (n=118) had total serum bilirubin (TSB) levels >20 mg per 100 ml (342 micromol l(-1); range: 20.7 to 59.9 mg per 100 ml). No specific TSB threshold coincided with onset of ABE. Of infants kernicterus, 34.9% were LGA (large for gestational age) as compared with 24.7% of term infants (>37 weeks GA). Although >90% mothers initiated breast-feeding, assessment of milk transfer and lactation support was suboptimal in most. Mortality was 4% (5 of 125) in infants readmitted at age 0.2 mg per 100 ml per hour), contributing factors, alone or in combination, included undiagnosed hemolytic disease, excessive bilirubin production related to extra-vascular hemolysis and delayed bilirubin elimination (including increased enterohepatic circulation, diagnosed and undiagnosed genetic disorders) in the context of known late prematurity (35 mg per 100 ml had post-icteric sequelae (n=73). There was a narrow margin of safety between birthing
Madzima, T R; Boshoff, M; Abuidris, D; Tsikai, N; Jones, G W
Radiation Oncology practices can exhibit heterogeneities between and sometimes within institutions. Clinical registries with scope and detail could quantify consistency and distinctives that justify difference. Retrospective, isolated clinical audits are problematic, typically because not all data are captured in charts, while useful prospective clinical registries will have to be practical, efficient and accurate. We tested feasibility of a clinical registry at a critical time-point in the patient's clinical trajectory when treating physicians could have requisite data. This was a prospective and non-randomized observational study. Four centres used a 1-page form to acquire data during a 4-month period. Patients had curative breast, rectum or prostate cancers, or were palliative. Objectives were to demonstrate form completion and to delineate patterns of disease presentation and clinical practice. The 107 cases had 99% complete data, internally consistent within cases and centres. Similar practices were seen for 22 cases with curative rectal and prostate cancer, and 34 palliative cases, but of the 51 curative breast cancer cases those in Africa were with greater Stage, underwent more extensive surgery, were less likely to receive shorter radiation schedules, and were less exposed to Taxane-based chemotherapy regimens. This study demonstrates the feasibility for a simple clinical registry requiring minimal effort by participants. A real-time pan-African registry, operating continually or in regular waves, could provide important knowledge at little cost.
Chaitman, B R; Davis, K B; Dodge, H T; Fisher, L D; Pettinger, M; Holmes, D R; Kaiser, G C
Medical certification to return to work after coronary bypass surgery in occupations that carry a risk to public safety is controversial, particularly for airline pilots. To address this issue, 10,312 patients from the CASS registry who underwent coronary bypass surgery were studied and 2,326 men with clinical and postoperative characteristics similar to those of the average airline pilot who might apply to renew his license after surgery were selected. The 5 year probability of remaining free of an acute cardiac event, defined as acute coronary insufficiency, myocardial infarction or sudden death, was 0.92 +/- 0.01 (mean +/- SE) for the 1,207 men without previous myocardial infarction and 0.98 +/- 0.01 for the 122 men who never smoked and did not have a history of hypertension. Among the 1,119 men with a previous myocardial infarction, the probability of remaining free of acute cardiac events was 0.91 +/- 0.02 and 0.92 +/- 0.02 when left ventricular contraction score was 5 to 9 and 10 or greater, respectively. In this patient subgroup, mortality rate was similar to that of the age-matched U.S. male population when the left ventricular contraction score was 5 to 9 (4.0% versus 4.3%; p = NS) but significantly worse when the left ventricular contraction score was 10 or greater (7% versus 4.2%; p = 0.05). The data from this CASS registry study are pertinent to the question of operationally unlimited first-class medical certification of carefully selected airline pilots after coronary bypass surgery.(ABSTRACT TRUNCATED AT 250 WORDS)
Klinke, Vincenzo; Muzzarelli, Stefano; Lauriers, Nathalie; Locca, Didier; Vincenti, Gabriella; Monney, Pierre; Lu, Christian; Nothnagel, Detlev; Pilz, Guenter; Lombardi, Massimo; van Rossum, Albert C; Wagner, Anja; Bruder, Oliver; Mahrholdt, Heiko; Schwitter, Juerg
Cardiovascular magnetic resonance (CMR) has become an important diagnostic imaging modality in cardiovascular medicine. However, insufficient image quality may compromise its diagnostic accuracy. We aimed to describe and validate standardized criteria to evaluate a) cine steady-state free precession (SSFP), b) late gadolinium enhancement (LGE), and c) stress first-pass perfusion images. These criteria will serve for quality assessment in the setting of the Euro-CMR registry. Thirty-five qualitative criteria were defined (scores 0-3) with lower scores indicating better image quality. In addition, quantitative parameters were measured yielding 2 additional quality criteria, i.e. signal-to-noise ratio (SNR) of non-infarcted myocardium (as a measure of correct signal nulling of healthy myocardium) for LGE and % signal increase during contrast medium first-pass for perfusion images. These qualitative and quantitative criteria were assessed in a total of 90 patients (60 patients scanned at our own institution at 1.5T (n=30) and 3T (n=30) and in 30 patients randomly chosen from the Euro-CMR registry examined at 1.5T). Analyses were performed by 2 SCMR level-3 experts, 1 trained study nurse, and 1 trained medical student. The global quality score was 6.7±4.6 (n=90, mean of 4 observers, maximum possible score 64), range 6.4-6.9 (p=0.76 between observers). It ranged from 4.0-4.3 for 1.5T (p=0.96 between observers), from 5.9-6.9 for 3T (p=0.33 between observers), and from 8.6-10.3 for the Euro-CMR cases (p=0.40 between observers). The inter- (n=4) and intra-observer (n=2) agreement for the global quality score, i.e. the percentage of assignments to the same quality tertile ranged from 80% to 88% and from 90% to 98%, respectively. The agreement for the quantitative assessment for LGE images (scores 0-2 for SNR 5, respectively) ranged from 78-84% for the entire population, and 70-93% at 1.5T, 64-88% at 3T, and 72-90% for the Euro-CMR cases. The agreement for perfusion images
Gilard, Martine; Schlüter, Michael; Snow, Thomas M; Dall'Ara, Gianni; Eltchaninoff, Helene; Moat, Neil; Goicolea, Javier; Ussia, Gian Paolo; Kala, Petr; Wenaweser, Peter; Zembala, Marian; Nickenig, Georg; Price, Susanna; Alegria Barrero, Eduardo; Iung, Bernard; Zamorano, Pepe; Schuler, Gerhard; Corti, Roberto; Alfieri, Ottavio; Prendergast, Bernard; Ludman, Peter; Windecker, Stephan; Sabate, Manel; Witkowski, Adam; Danenberg, Haim; Schroeder, Erwin; Romeo, Francesco; Macaya, Carlos; Derumeaux, Geneviève; Laroche, Cécile; Pighi, Michele; Serdoz, Roberta; Di Mario, Carlo
Our aim was to assess one-year outcomes of patients enrolled in the pilot European Sentinel Registry of Transcatheter Aortic Valve Implantation (TAVI). One-year outcomes of 4,571 patients (81.4±7.2 years, 2,291 [50.1%] male) receiving TAVI with the SAPIEN XT (57.3%) or CoreValve prosthesis at 137 European centres were analysed using Kaplan-Meier and Cox proportional hazards regression techniques. At one year, 3,341 patients were alive, 821 had died, and 409 were lost to follow-up. Of 2,125 patients who underwent functional assessment, 1,916 (90%) were in New York Heart Association (NYHA) Class I/II at one year, with functional improvement from baseline noted in 1,682 patients (88%). One-year survival based on 4,564 patients was estimated at 79.1%. Independent baseline predictors of mortality were increasing age and logistic EuroSCORE, the presence of NYHA III/IV, chronic obstructive pulmonary disease, and atrial fibrillation. Female gender was associated with a 4% survival benefit at one year. Vascular access routes other than transfemoral were associated with poorer survival. Procedural failure and major periprocedural complications had an adverse impact on survival. Contemporary European experience attests to the effectiveness of routine TAVI in unselected elderly patients.
Kajüter, H; Batzler, W U; Krieg, V; Heidinger, O; Hense, H-W
The Cancer Registry of North-Rhine-Westphalia stores exclusively encrypted personal identifiers of registered cancer patients. Therefore, comparisons with secondary data sets can only be performed by record linkage procedures that are based on encrypted personal identifiers. We report on a pilot study which linked encrypted personal data from the disease management program for patients with diabetes mellitus type 2 (DMP-DM2) with the database of the EKR NRW in order to test the feasibility and efficiency of these record linkage procedures. Personal identifying variables of the DMP records were encrypted in a 2-stage process before being sent electronically to the EKR NRW where they were subsequently submitted to a probabilistic record linkage with the registry data. The study included 27 450 participants who were insured at the AOK NordWest, residents of the district Münster and who were aged 40-79 years at the time of first enrolment to the DMP-DM2 between June 2003-July 2008. The electronic processing time of the semi-automatic record linkage procedure took about 24 h. Approximately 2% of the records had to be reviewed manually. After exclusion of prevalent cancer cases, multiple primaries and inadequate data, 26 742 participants (47.3% men; 52.7% women) remained in the data set. About 1 364 cohort members (759 men, 605 women) were diagnosed with cancer after submission to the disease management program. The DMP-DM2 records were encrypted and linked to cancer registry data with a moderate personnel and financial input and high efficiency. Linked records were instantly usable for epidemiological analyses. Experiences of the pilot study suggest that future linkage studies can further advance the level of data protection, without losses in efficiency, by moderately complex software modifications and amendments of the data flow. © Georg Thieme Verlag KG Stuttgart · New York.
Proietti, Marco; Laroche, Cécile; Opolski, Grzegorz; Maggioni, Aldo P; Boriani, Giuseppe; Lip, Gregory Y H
Atrial fibrillation (AF) is commonly associated with a high risk of stroke, thromboembolism, and mortality. The 1-year follow-up of the EURObservational Research Programme-Atrial Fibrillation (EORP-AF) Pilot Registry demonstrated a high mortality but good outcomes with European Society of Cardiology guideline-adherent therapy. Whether these 'real-world' observations on patients managed by European cardiologists extend to 2 years remains uncertain. In this report from the EORP-AF General Registry Pilot Phase, we provide data on the 2-year follow-up outcomes. Consistent with the 1-year follow-up report, only a small proportion of patients were symptomatic (24.9%), with minor differences between the different AF subtypes. Persistence of oral anticoagulant (OAC) therapy remains high at 2-years, with ∼80% of patients treated with OAC. The prescribing rates of non-vitamin K antagonist oral anticoagulants are progressively increasing (13.7% at 2 years). Rate and rhythm control approaches remained consistent across the entire follow-up observation. Overall mortality rates remained high, with 5.0% of patients dead during the 2-year follow-up, mostly due to cardiovascular causes (61.8%). Atrial fibrillation readmissions were frequent, particularly related to arrhythmias and heart failure. On multivariate analyses, any cardiovascular reason for admission rather than AF was significantly associated with increased mortality during the 2-year follow-up. In this 2-year follow-up report from EORP-AF, mortality rates with AF remain high from cardiovascular causes, despite the high prevalent use of OAC. Improved management strategies to reduce major adverse outcomes in AF patients are needed.
Gabbe, Belinda J; Watterson, Dina M; Singer, Yvonne; Darton, Anne
Most studies about burn injury focus on admitted cases. To compare outpatient and inpatient presentations at burn centers in Australia to inform the establishment of a repository for outpatient burn injury. Data for sequential outpatient presentations were collected at seven burn centers in Australia between December 2010 and May 2011 and compared with inpatient admissions from these centers recorded by the Burns Registry of Australia and New Zealand for the corresponding period. There were 788 outpatient and 360 inpatient presentations. Pediatric outpatients included more children burns (39% vs 24%). Adult outpatients included fewer males (58% vs 73%) and intentional injuries (3.3% vs 10%), and more scald (46% vs 30%) and contact burns (24% vs 13%). All pediatric, and 98% of adult, outpatient presentations involved a %TBSAburns presenting to burn centers differed to inpatient admission data, particularly with respect to etiology and burn severity, highlighting the importance of the need for outpatient data to enhance burn injury surveillance and inform prevention. Copyright © 2014 Elsevier Ltd and ISBI. All rights reserved.
The Pan African Clinical Trials Registry (www.pactr.org), was established in early 2007 as the AIDS, TB and Malaria (ATM) Clinical Trials Registry with the aim of piloting the concept of a registry that would cater to the specific needs of African trialists. In 2009 the ATM Registry expanded its remit to include all diseases for all ...
... News About Neurology Image Library Search The Internet Stroke Center Trials Registry Clinical Trials Interventions Conditions Sponsors ... a clinical trial near you Welcome to the Stroke Trials Registry Our registry of clinical trials in ...
Department of Veterans Affairs — The Clinical Case Registries (CCR) replaced the former Immunology Case Registry and the Hepatitis C Case Registry with local and national databases. The CCR:HIV and...
Department of Veterans Affairs — The Converged Registries platform is a hardware and software architecture designed to host individual patient registries and eliminate duplicative development effort...
... studies suggested a link with exposure to trace elements, solvents, radiation, and agricultural chemicals. No confirmed link ... Links Registry Testimonials External Research Get the Facts Infographic Research Resources Biorepository ALS Biorepository Pilot ALS Biorepository ...
Bejjani, Naim; Beaupain, Blandine; Bertrand, Yves; Bellanne-Chantelot, Christine; Donadieu, Jean
We developed a diagnostic score to differentiate congenital from noncongenital neutropenia at the time of diagnosis using reliable data collected at the first visit of a patients with neutropenia. In a pilot retrospective study, we included 120 patients diagnosed with chronic neutropenia; 61 had congenital and 59 had noncongenital neutropenia. We reviewed patient medical charts and collected the initial complete blood count (CBC) and other reliable data. We used logistic regression to determine the probability that the neutropenia was congenital. On the initial CBC, the degree of neutropenia had no predictive value; only monocytosis >1.5 × 109 /l, hemoglobin neutropenia. The most predictive factors for congenital neutropenia were a medical history (consanguinity and patient history of neutropenia), severe infections, and oral stomatitis or gingivitis at the time of diagnosis. The age at diagnosis had limited predictive value. A diagnosis of congenital neutropenia may be reliably suspected based only on information from the CBC, some basic information from patient and parent interviews, and a clinical examination. A pilot score with six factors that could be readily, reliably collected, should facilitate the diagnosis of congenital neutropenia. © 2017 Wiley Periodicals, Inc.
Pagola, Jorge; Juega, Jesus; Francisco-Pascual, Jaume; Moya, Angel; Sanchis, Mireia; Bustamante, Alejandro; Penalba, Anna; Usero, Maria; Cortijo, Elisa; Arenillas, Juan F; Calleja, Ana I; Sandin-Fuentes, Maria; Rubio, Jeronimo; Mancha, Fernando; Escudero-Martinez, Irene; Moniche, Francisco; de Torres, Reyes; Pérez-Sánchez, Soledad; González-Matos, Carlos E; Vega, Ángela; Pedrote, Alonso A; Arana-Rueda, Eduardo; Montaner, Joan; Molina, Carlos A
We describe the feasibility of monitoring with a Textile Wearable Holter (TWH) in patients included in Crypto AF registry. We monitored cryptogenic stroke patients from stroke onset (<3days) continuously during 28days. We employed a TWH composed by a garment and a recorder. We compared two garments (Lead and Vest) to assess rate of undiagnosed Atrial Fibrillation (AF) detection, monitoring compliance, comfortability (1 to 5 points), skin lesions, and time analyzed. We describe the timing of AF detection in three periods (0-3, 4-15 and 16-28days). The rate of undiagnosed AF detection with TWH was 21.9% (32 out of 146 patients who completed the monitoring). Global time compliance was 90% of the time expected (583/644h). The level of comfortability was 4 points (IQR 3-5). We detected reversible skin lesions in 5.47% (8/146). The comfortability was similar but time compliance (in hours) was longer in Vest group 591 (IQR [521-639]) vs. Lead 566 (IQR [397-620]) (p=0.025). Also, time analyzed was more prolonged in Vest group 497 (IQR [419-557]) vs. Lead (336h (IQR [140-520]) (p=0.001)). The incidence of AF increases from 5.6% (at 3days) to 17.5% (at 15th day) and up to 20.9% (at 28th day). The percentage of AF episodes detected only in each period was 12.5% (0-3days); 21.7% (4-15days) and 19% (16-28days). 28days Holter monitoring from the acute phase of the stroke was feasible with TWH. Following our protocol, only five patients were needed to screen to detected one case of AF. Copyright © 2017 Elsevier B.V. All rights reserved.
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...
Regional differences in presentation and treatment of patients with atrial fibrillation in Europe: a report from the EURObservational Research Programme Atrial Fibrillation (EORP-AF) Pilot General Registry.
Lip, Gregory Y H; Laroche, Cécile; Boriani, Giuseppe; Dan, Gheorghe-Andrei; Santini, Massimo; Kalarus, Zbigniew; Rasmussen, Lars Hvilsted; Oliveira, Mário Martins; Mairesse, Georges; Crijns, Harry J G M; Simantirakis, Emmanouil; Atar, Dan; Maggioni, Aldo P; Tavazzi, Luigi
Country differences in management practices are evident, and the publication of management guidelines by the European Society of Cardiology (ESC) and other learned societies has tried to recommend a uniform evidence-based approach to management. Despite the availability of guidelines and efforts to improve implementation, differences in guideline adherence are evident, and differences between countries and regions within Europe are therefore likely. In this analysis from the baseline dataset of the EORP-AF Pilot survey, we examined regional differences in presentation and treatment of contemporary patients with atrial fibrillation (AF) in Europe, as managed by European cardiologists. We focused on a subgroup of 902 hospital admitted patients in whom no rhythm control was performed or planned. Chronic heart failure was more common in East countries (P < 0.0001) while hypertension and peripheral artery disease were more common in South countries (both P < 0.0001). Previous bleeding and chronic kidney disease were more common in South countries (both P < 0.0001). A CHA2DS2-VASc score of ≥2 was highest in East and South countries (93.0 and 95.3%, respectively) compared with 80.8% in West countries (P < 0.0001). A HAS-BLED score of ≥3 was also highest in East and South countries (18.0 and 29.2% respectively) compared with 4.8% in West countries (P < 0.0001). Oral anticoagulation (OAC) use (either as OAC or OAC plus antiplatelet therapy) in West, East, and South countries was 72.0, 74.7, and 76.2%, respectively. Only antiplatelet therapy was used in 13.6, 15.4, and 12.4%, respectively. An initial rate control strategy only was most common in South countries (77.8%) (P < 0.0001). From the systematic collection of contemporary data regarding the management and treatment of AF in nine participating member ESC countries, we provide hypothesis-generating insights into regional management practices in Europe with regard to patient characteristics and treatment options
Piyaskulkaew, Chatchawan; Singh, Tejwant; Szpunar, Susan; Saravolatz, Louis; Rosman, Howard
The CHADS(2) score is widely used to assess the risk of stroke in patients with atrial fibrillation (AF). Patients with score of 0 and 1 are considered 'low risk' and are often treated with aspirin. In a Danish Study, the CHA(2)DS(2)--VASc score was shown to identify low and high-risk subgroups among patients with CHADS(2) score of 0 and 1, with annual risk ranging from 0.84 to 8.18%. This study seeks to assess whether using CHA(2)DS(2)--VASc score will identify high-risk subset of patients with low CHADS(2) scores in an American population. This pilot study examined data from our cardiology fellowship ambulatory clinics from January 2009 to May 2012 using the NCDR-PINNACLE registry. Each cardiology fellow entered patients' data using on-line software developed by the American College of Cardiology. Among 2,048 patients followed at our clinics, 478 had AF. Of those, 161 patients had CHADS(2) score of 0 (44 patients) or 1 (117 patients). Calculating the CHA(2)DS(2)--VASc score in these patients, 12 (7.4%) had score of 0, 50 (31.1%) had score of 1, 66(41%) had score of 2, 31 (19.3%) had score of 3 and 2 (1.2%) had score of 4. Using original CHADS(2) recommendation, warfarin would not be strongly recommended in any of these patients. Utilizing the CHA(2)DS(2)--VASc score, 61.5% of the 161 patients would have a score of 2 or more signifying increased risk where anticoagulation may be indicated. Compared to CHADS(2), CHA(2)DS(2)--VASc may more precisely predict the risk of stroke and anticoagulation strategy in low-risk patients with non-valvular AF.
U.S. Environmental Protection Agency — The Facility Registry Service (FRS) provides an integrated source of comprehensive (air, water, and waste) environmental information about facilities across EPA,...
Duan, Haiping; Ning, Feng; Zhang, Dongfeng
In 1998, the Qingdao Twin Registry was initiated as the main part of the Chinese National Twin Registry. By 2005, a total of 10,655 twin pairs had been recruited. Since then new twin cohorts have been sampled, with one longitudinal cohort of adolescent twins selected to explore determinants of me...
Gilling, M.; Budtz-Jorgensen, E.; Boonen, S. E.
The Danish Huntington's Disease Registry (DHR) is a nationwide family registry comprising 14 245 individuals from 445 Huntington's disease (HD) families of which the largest family includes 845 individuals in 8 generations. 1136 DNA and/or blood samples and 18 fibroblast cultures are stored...
Schuurman, Ineke; Windhouwer, M.; Shkaravska, O.
Since a few months the CLARIN Concept Registry (CCR;www.clarin.eu/conceptregistry) is operational, the open access, OpenSKOS-based registry replacing ISOcat. Although using ISOcat had been encouraged by CLARIN, it had its drawbacks: a rich data model combined with a very open update strategy turned
Memon, S.; Szigeti, G.; Field, L.
This documents describes the overall development plan of the EMI Registry product, the plan focuses on the realisation of the EMI Registry specification as defined in the document. It is understood that during the course of the development phase the specification will likely evolve and the changes will be fed into the specification document.
Mygind-Klavsen, Bjarne; Grønbech Nielsen, Torsten; Maagaard, Niels
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 DH...
Federal Communications Commission — Updated as of 5Oct2017. The Registry lists PSAPs by an FCC assigned identification number, PSAP Name, State, County, City, and provides information on any type of...
U.S. Environmental Protection Agency — Data Element Registry Services (DERS) is a resource for information about value lists (aka code sets / pick lists), data dictionaries, data elements, and EPA data...
Johnsen, Søren Paaske; Ingeman, Annette; Hundborg, Heidi Holmager; Schaarup, Susanne Zielke; Gyllenborg, Jesper
The aim of the Danish Stroke Registry is to monitor and improve the quality of care among all patients with acute stroke and transient ischemic attack (TIA) treated at Danish hospitals. All patients with acute stroke (from 2003) or TIA (from 2013) treated at Danish hospitals. Reporting is mandatory by law for all hospital departments treating these patients. The registry included >130,000 events by the end of 2014, including 10,822 strokes and 4,227 TIAs registered in 2014. The registry holds prospectively collected data on key processes of care, mainly covering the early phase after stroke, including data on time of delivery of the processes and the eligibility of the individual patients for each process. The data are used for assessing 18 process indicators reflecting recommendations in the national clinical guidelines for patients with acute stroke and TIA. Patient outcomes are currently monitored using 30-day mortality, unplanned readmission, and for patients receiving revascularization therapy, also functional level at 3 months poststroke. Sociodemographic, clinical, and lifestyle factors with potential prognostic impact are registered. The Danish Stroke Registry is a well-established clinical registry which plays a key role for monitoring and improving stroke and TIA care in Denmark. In addition, the registry is increasingly used for research.
Johnsen, Søren Paaske; Ingeman, Annette; Hundborg, Heidi Holmager
AIM OF DATABASE: The aim of the Danish Stroke Registry is to monitor and improve the quality of care among all patients with acute stroke and transient ischemic attack (TIA) treated at Danish hospitals. STUDY POPULATION: All patients with acute stroke (from 2003) or TIA (from 2013) treated...... at Danish hospitals. Reporting is mandatory by law for all hospital departments treating these patients. The registry included >130,000 events by the end of 2014, including 10,822 strokes and 4,227 TIAs registered in 2014. MAIN VARIABLES: The registry holds prospectively collected data on key processes...... of care, mainly covering the early phase after stroke, including data on time of delivery of the processes and the eligibility of the individual patients for each process. The data are used for assessing 18 process indicators reflecting recommendations in the national clinical guidelines for patients...
Özcan, Cengiz; Juel, Knud; Lassen, Jens Flensted
AIM: The Danish Heart Registry (DHR) seeks to monitor nationwide activity and quality of invasive diagnostic and treatment strategies in patients with ischemic heart disease as well as valvular heart disease and to provide data for research. STUDY POPULATION: All adult (≥15 years) patients...... undergoing coronary angiography (CAG), percutaneous coronary intervention (PCI), coronary artery bypass grafting, and heart valve surgery performed across all Danish hospitals were included. MAIN VARIABLES: The DHR contains a subset of the data stored in the Eastern and Western Denmark Heart Registries (EDHR...
Full Text Available Lone Baandrup,1 Charlotte Cerqueira,2 Lea Haller,3 Lene Korshøj,3 Inge Voldsgaard,4 Merete Nordentoft5 1Centre for Neuropsychiatric Schizophrenia Research (CNSR and Centre for Clinical Intervention and Neuropsychiatric Schizophrenia Research (CINS, Mental Health Centre Glostrup, Copenhagen University Hospital, Glostrup, 2Registry Support Centre (East – Epidemiology and Biostatistics, Research Centre for Prevention and Health, Capital Region of Denmark, Copenhagen, 3The Danish Clinical Registries, Registry Support Centre for Health Quality and Informatics (KCKS-West, Aarhus, 4Psychosis Ward, Section P, Aarhus University Hospital, Risskov, 5Mental Health Centre Copenhagen, Mental Health Services in the Capital Region of Denmark, University of Copenhagen, Copenhagen, DenmarkAim of database: To systematically monitor and improve the quality of treatment and care of patients with schizophrenia in Denmark. In addition, the database is accessible as a resource for research.Study population: Patients diagnosed with schizophrenia and receiving mental health care in psychiatric hospitals or outpatient clinics. During the first year after the diagnosis, patients are classified as incident patients, and after this period as prevalent patients.Main variables: The registry currently contains 21 clinical quality measures in relation to the following domains: diagnostic evaluation, antipsychotic treatment including adverse reactions, cardiovascular risk factors including laboratory values, family intervention, psychoeducation, postdischarge mental health care, assessment of suicide risk in relation to discharge, and assessment of global functioning.Descriptive data: The recorded data are available electronically for the reporting clinicians and responsible administrative personnel, and they are updated monthly. The registry publishes the national and regional results of all included quality measures in the annual audit reports. External researchers may
Dr. Loria Pollack, a Senior Medical Epidemiologist, talks about the importance of cancer registry data to understanding how cancer affects the United Statesânow and in the future. Created: 5/24/2017 by National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP). Date Released: 5/24/2017.
Lilleker, James B; Vencovsky, Jiri; Wang, Guochun
AIMS: The EuroMyositis Registry facilitates collaboration across the idiopathic inflammatory myopathy (IIM) research community. This inaugural report examines pooled Registry data. METHODS: Cross-sectional analysis of IIM cases from 11 countries was performed. Associations between clinical subtyp...
SKYTTHE, AXEL; KYVIK, KIRSTEN OHM; HOLM, NIELS VILSTRUP; CHRISTENSEN, KAARE
Introduction The Danish Twin Registry is a unique source for studies of genetic, familial and environmental factors on life events, health conditions and diseases. Content More than 85,000 twin pairs born 1870–2008 in Denmark. Validity and coverage Four main ascertainment methods have been employed. Completeness of ascertainment varies according to birth cohorts. For birth cohorts 1870–1930 both twins should survive to age 6 years. From 1931–1968 72% of all twin pairs has been ascertained, with complete ascertainment of all live born twins since 1968. Conclusion Because twins have been identified independent of traits and on a population basis, the Danish Twin Registry is well suited for studies to understand the influence of genetic and environmental factors for a wide variety of diseases and traits. PMID:21775358
Skytthe, Axel; Ohm Kyvik, Kirsten; Vilstrup Holm, Niels
Introduction: The Danish Twin Registry is a unique source for studies of genetic, familial and environmental factors on life events, health conditions and diseases. Content: More than 85,000 twin pairs born 1870-2008 in Denmark. Validity and coverage: Four main ascertainment methods have been...... employed. Completeness of ascertainment varies according to birth cohorts. For birth cohorts 1870-1930 both twins should survive to age 6 years. From 1931-1968 72% of all twin pairs has been ascertained, with complete ascertainment of all live born twins since 1968. CONCLUSION: Because twins have been...... identified independent of traits and on a population basis, the Danish Twin Registry is well suited for studies to understand the influence of genetic and environmental factors for a wide variety of diseases and traits....
Baandrup, Lone; Cerqueira, Charlotte; Haller, Lea
Aim of database: To systematically monitor and improve the quality of treatment and care of patients with schizophrenia in Denmark. In addition, the database is accessible as a resource for research. Study population: Patients diagnosed with schizophrenia and receiving mental health care...... to the data for use in specific research projects by applying to the steering committee. Conclusion: The Danish Schizophrenia Registry represents a valuable source of informative data to monitor and improve the quality of care of patients with schizophrenia in Denmark. However, continuous resources and time...
Baandrup, Lone; Cerqueira, Charlotte; Haller, Lea
Aim of database: To systematically monitor and improve the quality of treatment and care of patients with schizophrenia in Denmark. In addition, the database is accessible as a resource for research. Study population: Patients diagnosed with schizophrenia and receiving mental health care...... to the data for use in specific research projects by applying to the steering committee. Conclusion: The Danish Schizophrenia Registry represents a valuable source of informative data to monitor and improve the quality of care of patients with schizophrenia in Denmark. However, continuous resources and time...
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
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
Arboe, Bente; Josefsson, Pär; Jørgensen, Judit
AIM OF DATABASE: The Danish National Lymphoma Registry (LYFO) was established in order to monitor and improve the diagnostic evaluation and the quality of treatment of all lymphoma patients in Denmark. STUDY POPULATION: The LYFO database was established in 1982 as a seminational database including...... all lymphoma patients referred to the departments of hematology. The database became nationwide on January 1, 2000. MAIN VARIABLES: The main variables include both clinical and paraclinical variables as well as details of treatment and treatment evaluation. Up to four forms are completed for each......-100 years) and a male/female ratio of 1.23:1. Patients can be registered with any of 42 different subtypes according to the World Health Organization classifications. CONCLUSION: LYFO is a nationwide database for all lymphoma patients in Denmark and includes detailed information. This information is used...
Immediate and 12-Month Outcomes of Ischemic Versus Nonischemic Functional Mitral Regurgitation in Patients Treated With MitraClip (from the 2011 to 2012 Pilot Sentinel Registry of Percutaneous Edge-To-Edge Mitral Valve Repair of the European Society of Cardiology).
Pighi, Michele; Estevez-Loureiro, Rodrigo; Maisano, Francesco; Ussia, Gian P; Dall'Ara, Gianni; Franzen, Olaf; Laroche, Cécile; Settergren, Magnus; Winter, Reidar; Nickenig, Georg; Gilard, Martine; Di Mario, Carlo
In literature, there are limited data comparing ischemic mitral regurgitation (I-MR) versus nonischemic MR regarding outcomes after percutaneous "edge-to-edge" repair. We aimed to describe the early and 12-month results after MitraClip device implantation regarding the 2 etiologies. From January 2011 to December 2012, the Transcatheter Valve Treatment Sentinel Pilot Registry included 452 patients with MR who underwent MitraClip procedure in 25 centers across Europe. The prevalent etiology was I-MR (235 patients, 52.0%). I-MR group had a significantly higher proportion of men (74.9 vs 59.9%, p logistic EuroSCORE 24.8 ± 18.2 vs 18.8 ± 16.3, p reverse atrial remodeling after clip, there were no significant changes in left ventricular volumes. In conclusion, this large independent cohort showed that percutaneous "edge-to-edge" therapy was associated with early- and long-term improvement of MR severity and functional condition both in patients with I-MR and nonischemic MR. There were no significant differences between the 2 etiologies regarding survival and freedom from rehospitalization due to heart failure at the 1-year follow-up. Copyright © 2016 Elsevier Inc. All rights reserved.
Rosenblum, Amanda M.; Li, Alvin Ho-ting; Roels, Leo; Stewart, Bryan; Prakash, Versha; Beitel, Janice; Young, Kimberly; Shemie, Sam; Nickerson, Peter; Garg, Amit X.
The variability in deceased organ donation registries worldwide has received little attention. We considered all operating registries, where individual wishes about organ donation were recorded in a computerized database. We included registries which recorded an individual's decision to be a donor (donor registry), and registries which only recorded an individual's objection (non-donor registry). We collected information on 15 characteristics including history, design, use and number of regis...
Secco, Gioel Gabrio; Rittger, Harald; Hoffmann, Stefan; Richardt, Gert; Abdel-Wahab, Mohamed; Reinecke, Holger; Lotan, Chaim; Werner, Gerald; Sievert, Horst; Foin, Nicolas; Di Mario, Carlo
Provisional stenting of the side-branch (SB) is the universally accepted gold standard while there is still controversy on the usefulness of routine dilatation of the SB ostium. Recrossing the struts of a previously deployed stent with a wire and a balloon can prove challenging and is occasionally unsuccessful, mainly because the balloon tip hits a stent strut. This prospective multicenter international registry tested the crossing ability procedural results of a new-dedicated ultrashort balloon specifically designed for side branch dilatation (Glider, TriReme Medical, Pleasanton, CA, USA). One hundred and twenty five patients (for a total of 131 bifurcation lesions) were enrolled in the registry between January 2009 and May 2012. The Glider was used as first choice in alternative to conventional balloon (group I, 72%) or as bail-out after unsuccessful previous attempt at crossing with small conventional low-profile balloons (group II, 28%). Postprocedural coronary artery dissections and in-hospital MACE (death, myocardial infarction and repeat revascularization) were assessed. Technical success was defined as the ability of the Glider to recross the struts of a previously deployed stent while procedural success was defined as less of residual 50% diameter stenosis at the origin of the SB with a final TIMI 3 and/or freedom from in-hospital MACE. Technical success was achieved, respectively, in 92% (group I), and 83% (group II). Clinical and angiographic procedural success was achieved in 98% of the lesions. In Group II, no other balloon of the same size could cross in cases where Glider could not. A total of 13 complications were observed, including nine ostial SB dissection four of which needed a second stent on the SB, one stent loss, two severe coronary spasms, and two by thrombus formation. The unique possibility offered by this short dedicated balloon to orientate its beveled tip provides an effective strategy for recrossing stent struts when conventional low
Aslani, Hamidreza; Nourbakhsh, Seyed Taghi; Lahiji, Farivar A; Heydarian, Keykavoos; Jabalameli, Mahmood; Ghazavi, Mohammad Taghi; Tahmasebi, Mohammad Naghi; Fayyaz, Mahmoud Reza; Sazegari, Mohammad Ali; Mohaddes, Maziar; Rajabpour, Mojtaba; Emami, Mohammad; Jazayeri, Seyyed Mohammad; Madadi, Firooz; Farahini, Hossein; Mirzatoloee, Fardin; Gharahdaghi, Mohammad; Ebrahimzadeh, Mohammad Hossein; Ebrahimian, Mohammadreza; Mirvakili, Hossein; Bashti, Kaveh; Almasizadeh, Mohtasham; Abolghasemian, Mansour; Taheriazam, Afshin; Motififard, Mehdi; Yazdi, Hamidreza; Mobarakeh, Mahmood Karimi; Shayestehazar, Masoud; Moghtadae, Mehdi; Siavashi, Babak; Sajjadi, Mohammadreza M; Rasi, Alireza Manafi; Chabok, Seyyed Kazem; Zafarani, Zohreh; Salehi, Shahin; Ahmadi, Monireh; Mohammadi, Amin; Shahsavand, Mohammad Ebrahim
Periodic evaluation and monitoring the health and economic outcome of joint replacement surgery is a common and popular process under the territory of joint registries in many countries. In this article we introduce the methodology used for the foundation of the National Iranian Joint Registry (IJR) with a joint collaboration of the Social Security Organization (SSO) and academic research departments considering the requirements of the Iran's Ministry of Health and Education.
Approaches 18 19 Primary ADL Registry Contributors Contributor Records Entry Date Navy eLearning (US Navy) 2,086 08/05/2008 Joint Knowledge Development...custom catalog items (content packages) to multiple environments and platforms 2008 21 U.S. Navy Organizational Challenges Lack of consistent...ADL Registry http://adlregistry.adlnet.gov/ Navy eLearning Content Team https://www.netc.navy.mil/ile Joint Knowledge Online http
Lara Gallego, Beatriz; Abaitua Borda, Ignacio; Galán Gil, Genaro; Castillo Villegas, Diego; Casanova Espinosa, Álvaro; Cano Jiménez, Esteban; Ojanguren Arranz, Iñigo; Posada de la Paz, Manuel
This report describes the general characteristics, objectives and organizational aspects of the registries of rare respiratory diseases included in the National Registry of Rare Diseases of the Research Institute for Rare Diseases (ISCIII), in order to publicize their existence and encourage the participation of professionals. Information is collected on the following conditions: alpha-1 antitrypsin deficiency, idiopathic tracheal stenosis, adult pulmonary Langerhans' cell histiocytosis, lymphangioleiomyomatosis, alveolar proteinosis, and sarcoidosis. Copyright © 2013 SEPAR. Published by Elsevier Espana. All rights reserved.
The Danish Nephrology Registry's (DNR) primary function is to support the Danish public health authorities' quality control program for patients with end-stage renal disease in order to improve patient care. DNR also supplies epidemiological data to several international organizations and supports epidemiological and clinical research. The study population included patients treated with dialysis or transplantation in Denmark from January 1, 1990 to January 1, 2016, with retrospective data since 1964. DNR registers patient data (eg, age, sex, renal diagnosis, and comorbidity), predialysis specialist treatment, details of eight dialysis modalities (three hemodialysis and five peritoneal dialysis), all transplantation courses, dialysis access at first dialysis, treatment complications, and biochemical variables. The database is complete (nutritional and uremia status. Date and cause of death are also included. Six quality indicators are published annually, and have been associated with improvements in patient results, eg, a reduction in dialysis patient mortality, improved graft survival, and earlier referral to specialist care. Approximately, ten articles, mainly epidemiological, are published each year. DNR contains a complete description of end-stage renal disease patients in Denmark, their treatment, and prognosis. The stated aims are fulfilled.
Full Text Available James Heaf Department of Medicine, Roskilde Hospital, University of Copenhagen, Roskilde, Denmark Aim of database: The Danish Nephrology Registry's (DNR primary function is to support the Danish public health authorities' quality control program for patients with end-stage renal disease in order to improve patient care. DNR also supplies epidemiological data to several international organizations and supports epidemiological and clinical research. Study population: The study population included patients treated with dialysis or transplantation in Denmark from January 1, 1990 to January 1, 2016, with retrospective data since 1964. Main variables: DNR registers patient data (eg, age, sex, renal diagnosis, and comorbidity, predialysis specialist treatment, details of eight dialysis modalities (three hemodialysis and five peritoneal dialysis, all transplantation courses, dialysis access at first dialysis, treatment complications, and biochemical variables. The database is complete (<1% missing data. Patients are followed until death or emigration. Descriptive data: DNR now contains 18,120 patients, and an average of 678 is added annually. Data for each transplantation course include donor details, tissue type, time to onset of graft function, and cause of graft loss. Registered complications include peritonitis in peritoneal dialysis patients, causes of peritoneal dialysis technique failure, and transplant rejections. Fifteen biochemical variables are registered, mainly describing anemia control, mineral and bone disease, nutritional and uremia status. Date and cause of death are also included. Six quality indicators are published annually, and have been associated with improvements in patient results, eg, a reduction in dialysis patient mortality, improved graft survival, and earlier referral to specialist care. Approximately, ten articles, mainly epidemiological, are published each year. Conclusion: DNR contains a complete description of end
DiMarco, Gabriella; Hill, Dane; Feldman, Steven R
Patient registries are datasets containing information on patients with a particular disease or patients who are undergoing a specific treatment. Our objective was to search for and catalog the types of registries being used in dermatology and investigate their characteristics and uses. We searched Google, the Registry of Patient Registries, Orphanet, and ClinicalTrials.gov to compile a list of dermatology disease registries. We also conducted a literature review on the uses of dermatology registries using PubMed. We identified 48 dermatology patient registries, with 23 distinct diseases represented. We also identified 11 registries used for postmarketing surveillance of skin disease. Our search was limited to registries in English. Registries are commonly used for the study of rare dermatologic diseases and for postsurveillance monitoring of systemic therapies in more common dermatologic diseases, such as psoriasis. Copyright © 2016 American Academy of Dermatology, Inc. Published by Elsevier Inc. All rights reserved.
Full Text Available Background: In Peru, 11% of deaths are due to trauma. Iquitos is a large underserved Peruvian city isolated from central resources by its geography. Our objective was to implement a locally driven trauma registry to sustainably improve trauma healthcare in this region. Methods: All trauma patients presenting to the main regional referral hospital were included in the trauma registry. A pilot study retrospectively analyzed data from the first two months after implementation. Results: From March to April 2013, 572 trauma patients were entered into the database. Average age was 26.9 years. Ten percent of patients presented more than 24 hours after injury. Most common mechanisms of injury were falls (25.5%, motor vehicle collisions (23.3%, and blunt assault (10.5%. Interim analysis revealed that 99% of patients were entered into the database. However, documentation of vital signs was poor: 42% of patients had temperature, 26% had oxygen saturation documented. After reporting to registry staff, a significant increase in temperature (42 to 97%, P < 0.001 and oxygen saturation (26 to 92%, P < 0.001 documentation was observed. Conclusion: A trauma registry is possible to implement in a resource-poor setting. Future efforts will focus on analysis of data to enhance prevention and treatment of injuries in Iquitos.
Full Text Available Bente Arboe,1 Pär Josefsson,2 Judit Jørgensen,3 Jacob Haaber,4 Paw Jensen,5 Christian Poulsen,6 Dorthe Rønnov-Jessen,7 Robert S Pedersen,8 Per Pedersen,9 Mikael Frederiksen,10 Michael Pedersen,1 Peter de Nully Brown1 1Department of Hematology, Copenhagen University Hospital, Rigshospitalet, 2Department of Hematology, Copenhagen University Hospital, Herlev Hospital, Copenhagen, 3Department of Hematology, Aarhus University Hospital, Aarhus, 4Department of Hematology, Odense University Hospital, Odense, 5Department of Hematology, Aalborg University Hospital, Aalborg, 6Department of Hematology, Roskilde Hospital, Roskilde, 7Department of Hematology, Vejle Hospital, Vejle, 8Department of Hematology, Holstebro Hospital, Holstebro, 9Department of Hematology, Esbjerg Hospital, Esbjerg, 10Department of Hematology, Haderslev Hospital, Haderslev, Denmark Aim of database: The Danish National Lymphoma Registry (LYFO was established in order to monitor and improve the diagnostic evaluation and the quality of treatment of all lymphoma patients in Denmark. Study population: The LYFO database was established in 1982 as a seminational database including all lymphoma patients referred to the departments of hematology. The database became nationwide on January 1, 2000. Main variables: The main variables include both clinical and paraclinical variables as well as details of treatment and treatment evaluation. Up to four forms are completed for each patient: a primary registration form, a treatment form, a relapse form, and a follow-up form. Variables are used to calculate six result quality indicators (mortality 30 and 180 days after diagnosis, response to first-line treatment, and survival estimates 1, 3, and 5 years after the time of diagnosis, and three process quality indicators (time from diagnosis until the start of treatment, the presence of relevant diagnostic markers, and inclusion rate in clinical protocols. Descriptive data: Approximately 23
Rosenblum, Amanda M; Li, Alvin Ho-Ting; Roels, Leo; Stewart, Bryan; Prakash, Versha; Beitel, Janice; Young, Kimberly; Shemie, Sam; Nickerson, Peter; Garg, Amit X
The variability in deceased organ donation registries worldwide has received little attention. We considered all operating registries, where individual wishes about organ donation were recorded in a computerized database. We included registries which recorded an individual's decision to be a donor (donor registry), and registries which only recorded an individual's objection (non-donor registry). We collected information on 15 characteristics including history, design, use and number of registrants for 27 registries (68%). Most registries are nationally operated and government-owned. Registrations in five nations expire and require renewal. Some registries provide the option to make specific organ selections in the donation decision. Just over half of donor registries provide legally binding authorization to donation. In all national donor registries, except one, the proportion of adults (15+) registered is modest (donation decision mandatory to obtain a driver's license. Registered objections in non-donor registries are rare (organ donor registries worldwide necessitates public discourse and quality improvement initiatives, to identify and support leading practices in registry use. © 2012 The Authors. Transplant International © 2012 European Society for Organ Transplantation.
Lund, Bent; Mygind-Klavsen, Bjarne; Grønbech Nielsen, Torsten
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......, HSAS and NRS pain scores were submitted online by the patients pre-operatively and at 1 and 2-years follow-up. 2054 FAI procedures in 1835 patients were included in this study (219 patients had bilateral procedures performed). HAGOS demonstrated significant improvement in all subscales at follow up. EQ...
Department of Veterans Affairs — The Environmental Agent Service (EAS) Registries is the information system encompassing the Ionizing Radiation Registry (IRR), the Agent Orange Registry (AOR), and...
Rasmussen, Jeppe; Jakobsen, John; Brorson, Stig
(70% women) were reported to the registry between January 2006 and December 2008. Mean age at surgery was 69 years (SD 12). The most common indications were a displaced proximal humeral fracture (54%) or osteoarthritis (30%). 61% were stemmed hemiarthroplasties, 28% resurfacing hemiarthroplasties, 8...
Schjødt, Inge; Nakano, Anne; Egstrup, Kenneth
AIM OF DATABASE: The aim of the Danish Heart Failure Registry (DHFR) is to monitor and improve the care of patients with incident heart failure (HF) in Denmark. STUDY POPULATION: The DHFR includes inpatients and outpatients (≥18 years) with incident HF. Reporting to the DHFR is mandatory for the ...
Brønnum-Hansen, Henrik; Koch-Henriksen, Nils; Stenager, Egon
Introduction: The Danish Multiple Sclerosis (MS) Registry was established in 1956. Content: The register comprises data on all Danes who had MS in 1949 or who have been diagnosed since. Data on new cases and updated information on persons with an MS diagnosis already notified are continuously...
The Breast Cancer Family Registry and the Colon Cancer Family Registry were established by the National Cancer Institute as a resource for investigators to use in conducting studies on the genetics and molecular epidemiology of breast and colon cancer.
Full Text Available Nikolaj Eldrup,1,2 Charlotte Cerqueira,3 Louise de la Motte,2,4 Lisbet Knudsen Rathenborg,2,4 Allan K Hansen2,5 1Department of Cardiothoracic and Vascular Surgery, Aarhus University Hospital, 2Karbase, The Danish Vascular Registry, Aarhus, 3Registry Support Centre (East – Epidemiology and Biostatistics, Research Centre for Prevention and Health, Capital Region of Denmark, 4Department of Vascular Surgery, Rigshospitalet, Copenhagen University Hospital, Copenhagen, 5Department of Vascular Surgery, Aalborg University Hospital, Aalborg, Denmark Aim: The Danish Vascular Registry (DVR, Karbase, is monitoring arterial and advanced vein interventions conducted at all vascular departments in Denmark. The main aim of the DVR is to improve the quality of treatment for patients undergoing vascular surgery in Denmark by using the registry for quality assessment and research. Study population: All patients undergoing vascular interventions (surgical and endovascular at any vascular department in Denmark are registered in the DVR. The DVR was initiated in 1989, and each year, ~9,000 procedures are added. By January 2016, .180,000 procedures have been recorded. Since 2001, data completeness has been .90% (compared to the Danish National Patient Register. Main variables: Variables include information on descriptive patient data (ie, age, sex, height, and weight and comorbidity (ie, previous cardiovascular disease and diabetes. Process variable includes waiting time (time from event to medical contact and treatment and the type of procedures conducted. Outcome variables for in-hospital complications (ie, wound complications, myocardial infarction, stroke, amputation, respiratory complications, and renal insufficiency and 30-day patency are submitted. Variables for medical treatment (antithrombotic and statin treatment, amputation, and survival are extracted from nationwide, administrative registers. Conclusion: The DVR reports outcome on key indicators for
Hickey, Graeme L; Grant, Stuart W; Cosgriff, Rebecca; Dimarakis, Ioannis; Pagano, Domenico; Kappetein, Arie P; Bridgewater, Ben
Clinical registries will have an increasingly important role to play in health-care, with a number already established in cardiac surgery. This review covers the fundamentals of establishing and managing clinical registries, including legal and ethical frameworks along with intellectual property attribution. Also discussed are important issues relating to the processing of data, data extraction and conducting analyses using registry data.
... 46 Shipping 2 2010-10-01 2010-10-01 false Registry endorsement. 67.17 Section 67.17 Shipping COAST... DOCUMENTATION OF VESSELS Forms of Documentation; Endorsements; Eligibility of Vessel § 67.17 Registry endorsement. (a) A registry endorsement entitles a vessel to employment in the foreign trade; trade with Guam...
Bhutani, V K; Johnson, L
Breakdown in systems for safe newborn health-care delivery accounts for the majority of kernicterus cases encountered in the United States. Traditional epidemiologic investigations do not track the national incidence of severe hyperbilirubinemia and kernicterus or recognize its recent surge. Innovative investigative strategies are needed to seek more sensitive surrogates for kernicterus (often diagnosed late in infancy) and to overcome the limitations of retrospective continuity of adverse neonatal experiences because of severe hyperbilirubinemia. Root cause analysis of a cohort of infants who manifested kernicterus in the past two decades attests to some of the clinical and health-service barriers encountered by families as they negotiate health care from multiple providers at multiple sites during the first week after birth. Clinicians, health-care organizations, parents, and payors and purchasers of health care were often unaware of the ongoing patterns of care that may have obstructed preventive care. Now, partly based on these analyses, key recommendations have led to clinical usable guidelines for practitioners and have contributed to systems-oriented national guidelines for evidence-based safer management of newborn jaundice.(1) Clinician- and family-oriented tool kits have been made available, based on the report presented in this study, to facilitate effective implementation and thus optimize and institutionalize these guidelines (http://www.cdc.gov/jaundice). An informed partnership of parents and clinicians seems to be the most effective strategy to prevent severe neonatal hyperbilirubinemia and 'near-miss' cases of kernicterus in the United States.
Jakobsen, Erik; Rasmussen, Torben Riis
AIM OF DATABASE: The Danish Lung Cancer Registry (DLCR) was established by the Danish Lung Cancer Group. The primary and first goal of the DLCR was to improve survival and the overall clinical management of Danish lung cancer patients. STUDY POPULATION: All Danish primary lung cancer patients since...... 2000 are included into the registry and the database today contains information on more than 50,000 cases of lung cancer. MAIN VARIABLES: The database contains information on patient characteristics such as age, sex, diagnostic procedures, histology, tumor stage, lung function, performance...... the results are commented for local, regional, and national audits. Indicator results are supported by descriptive reports with details on diagnostics and treatment. CONCLUSION: DLCR has since its creation been used to improve the quality of treatment of lung cancer in Denmark and it is increasingly used...
Eldrup, Nikolaj; Cerqueira, Charlotte; de la Motte, Louise
AIM: The Danish Vascular Registry (DVR), Karbase, is monitoring arterial and advanced vein interventions conducted at all vascular departments in Denmark. The main aim of the DVR is to improve the quality of treatment for patients undergoing vascular surgery in Denmark by using the registry...... for quality assessment and research. STUDY POPULATION: All patients undergoing vascular interventions (surgical and endovascular) at any vascular department in Denmark are registered in the DVR. The DVR was initiated in 1989, and each year, ∼9,000 procedures are added. By January 2016, >180,000 procedures...... have been recorded. Since 2001, data completeness has been >90% (compared to the Danish National Patient Register). MAIN VARIABLES: Variables include information on descriptive patient data (ie, age, sex, height, and weight) and comorbidity (ie, previous cardiovascular disease and diabetes). Process...
Lacaze, Paul; Millis, Nicole; Fookes, Megan; Zurynski, Yvonne; Jaffe, Adam; Bellgard, Matthew; Winship, Ingrid; McNeil, John; Bittles, Alan H
When registries collect accurate clinical data over time, they can act as fundamental support structures for patients and their families and powerful cost-effective instruments to support clinical trials and translational research to improve quality of care, quality of life and survival. Registries are critical for rare diseases (RD) with low prevalence and propensity for variation in treatment and outcomes. Rare Voices Australia is leading a call for action to the research and clinical community to prioritise RD data collection and develop an integrated RD Registry strategy for Australia. Financial, operational and governance challenges exist for establishing and maintaining RD registries. As a multidisciplinary team whose interests converge on RD, we highlight the need for the establishment of an Australian RD Registry Alliance. This 'umbrella' organisation will: (i) bring together existing RD registries across Australia; (ii) establish National RD Registry Standards to support interoperability and cohesion across registries; (iii) develop strategies to attract sustainable funding from government and other sources to maximise the utility of existing RD registries and support the development of new RD registries. The most important role for the Alliance would be to use the RD registries for translational research to address current knowledge gaps about RD and to improve the care for the over 1.4 million Australians estimated to live with RD. © 2017 Royal Australasian College of Physicians.
Clinical data registries are platforms to extract, store, analyze, and disseminate large amounts of clinical data. The type of data contained in clinical data registries varies by the registry, and may include patient demographics, clinical examination findings, imaging and laboratory results, procedures performed, and patient-reported outcomes. When large numbers of participants submit data to a clinical data registry the data can then be analyzed in aggregate to answer new clinical questions. Analyses on the data may be performed to show outcomes over time, compare procedures, evaluate care patterns, among others. With the launch of an otolaryngology-specific clinical data registry, Regent, facial plastic and reconstructive surgeons have the opportunity to participate in a clinical data registry for the first time. Through broad participation in the registry, the specialty has a chance to optimize patient outcomes in a manner never before possible. Thieme Medical Publishers 333 Seventh Avenue, New York, NY 10001, USA.
Bouvy, Jacoline C; Blake, Kevin; Slattery, Jim
in the post-marketing setting. Methodological challenges met in conducting this study highlighted the need for a clarification of definitions and epidemiological concepts around patient registries. The results will inform the EMA Patient Registry initiative to support use of existing patient registries......PURPOSE: Regulatory agencies and other stakeholders increasingly rely on data collected through registries to support their decision-making. Data from registries are a cornerstone of post-marketing surveillance for monitoring the use of medicines in clinical practice. This study was aimed...... for a registry was made as a condition of the marketing authorisation. All centrally authorised products that received a positive opinion of the EMA Committee for Medicinal Products for Human Use between 1 January 2005 and 31 December 2013 were included. Data regarding registry design and experiences were...
Dräger, J; Petzold, S; Ristau, H; Trepte, S
Quality saving measures are required at the execution of extracorporeal LDL apheresis therapy (LDL apheresis) by the NUB guidelines of the national committee of physicians and health insurance. The saving measures apply to specialist, organizational and apparatical conditions for execution and accounting of treatment methods. Furthermore, as a result of the lawful requirements of SGB V, complementary BUB guidelines were introduced in 1999. These ought to engage the therapeutic benefit of a LDL apheresis treatment. Beyond measures for quality assurance at execution a documentation of treatment is explicitly demanded. For two years now the non-profit Quasa gGmbH has been developed the quality assurance registry for LDL apheresis with the background of those requirements. Since March 2003 the apheresis physicians can voluntarily take part in the registry initiative by internet. Beside the clinical patient's medical history, treatment relevant data are recorded. Because of the analysis of the nationally ascertained clinical data, for the first time it will be possible for the medical profession to fulfill the guidelines of quality assurance for LDL apheresis. Moreover the treating apheresis physicians can establish an EDV-based individual patient documentation. All necessary measures of data protection and data security are in process on the technical and logistic realization of this registry initiative. An epidemiological data evaluation is regularly accomplished and the results are provided to the public.
Manikas, Maria Ie
This PhD dissertation engages in the study of pilot (system) implementation. In the field of information systems, pilot implementations are commissioned as a way to learn from real use of a pilot system with real data, by real users during an information systems development (ISD) project and before...... objective. The prevalent understanding is that pilot implementations are an ISD technique that extends prototyping from the lab and into test during real use. Another perception is that pilot implementations are a project multiple of co-existing enactments of the pilot implementation. From this perspective...
O'Reilly, Gerard M; Cameron, Peter A; Joshipura, Manjul
The burden of injury is very high in developing countries. Trauma systems reduce mortality; the trauma registry is a key driver of improvements in trauma care. Developing countries have begun to develop trauma systems but the level of local trauma registry activity is unclear. The aim of this study was to determine a global estimate of trauma registry activity. A structured review of the literature was performed. All abstracts referring to a trauma registry over a two-year period were included. For the trauma registry described in each abstract, the source country was recorded. An additional search of web pages posted over a one year period was conducted. Those linked to an active trauma registry website were included and the country of the trauma registry was recorded. A selection of trauma registries from countries of different levels of development were identified and compared. 571 abstracts were included in the review. Most articles utilised "general" trauma registries (436(76%)) and were based at a single hospital (279(49%)). Other registries were limited to military or paediatric populations (36(6%) and 35(6%) articles respectively). Most articles sourced registries from the US (288(50%)), followed by Australia (45(8%)), Germany (32(6%)), Canada (27(5%)), UK (13(2%)), China (13(2%)) and Israel (12(2%)). The Americas produced most trauma registry articles and South East Asia the least. The majority of trauma registry articles originated from very highly developed countries 467(82%). Least developed countries had the fewest (5(1%)). The additional search yielded 37 web pages linked to 27 different trauma registry websites. Most of these were based in the US (16(59%)). The basic features of trauma registries, such as inclusion criteria, number and type of variables and injury severity scoring, varied widely depending on the country's level of development. This review, using a combination of the number of trauma registry articles and web pages to locate active
Ruff, Jesley C; Herndon, Jill Boylston; Horton, Roger A; Lynch, Julie; Mathwig, Dawn C; Leonard, Audra; Aravamudhan, Krishna
Health registries are commonly used in medicine to support public health activities and are increasingly used in quality improvement (QI) initiatives. Illustrations of dental registries and their QI applications are lacking. Within dentistry, caries risk assessment implementation and documentation are vital to optimal patient care. The purpose of this article is to describe the processes used to develop a caries risk assessment registry as a QI initiative to support clinical caries risk assessment, caries prevention, and disease management for children. Developmental steps reflected Agency for Healthcare Research and Quality recommendations for planning QI registries and included engaging "champions," defining the project, identifying registry features, defining performance dashboard indicators, and pilot testing with participant feedback. We followed Standards for Quality Improvement Reporting Excellence guidelines. Registry eligibility is patients aged 0-17 years. QI tools include prompts to register eligible patients; decision support tools grounded in evidence-based guidelines; and performance dashboard reports delivered at the provider and aggregated levels at regular intervals. The registry was successfully piloted in two practices with documented caries risk assessment increasing from 57 percent to 92 percent and positive feedback regarding the potential to improve dental practice patient centeredness, patient engagement and education, and quality of care. The caries risk assessment registry demonstrates how dental registries may be used in QI efforts to promote joint patient and provider engagement, foster shared decision making, and systematically collect patient information to generate timely and actionable data to improve care quality and patient outcomes at the individual and population levels. © 2017 American Association of Public Health Dentistry.
Navarro, Carmen; Molina, José Antonio; Barrios, Enrique; Izarzugaza, Isabel; Loria, Dora; Cueva, Patricia; Sánchez, María José; Chirlaque, María Dolores; Fernández, Leticia
Evaluate the feasibility of the REDEPICAN Guide (Red Iberoamericana de Epidemiología y Sistemas de Información en Cáncer) and its adaptation to the current situation of population-based cancer registries (PBCRs) in Latin America and the Caribbean as a useful tool to improve these registries. Experts in cancer registries and health audits designed the guide and developed seven domains to evaluate in PBCRs. Several criteria were selected for each domain, with corresponding standards, scored according to three levels of compliance. Two training courses for external evaluators and three discussion panels for experts were organized. The guide was tested in six PBCRs in Latin America and Spain. The guide contains 68 criteria, 10 of which are considered essential for a PBCR. Based on its score, a registry is regarded as acceptable (41-199), good (200-299), or excellent (300-350). The registry methods domain accounts for 25% of the score, followed by completeness and validity (19%), dissemination of outcomes (19%), structure (13%), confidentiality and ethical aspects (11%), comparability (9%), and the procedures manual (3%). The pilot project enabled (1) enhancement of criteria and standards, (2) expansion of the quality concept to include client needs, and (3) strengthening the dissemination of outcomes section. Two of the Latin American registries that were evaluated improved their quality, meeting the standards of the International Agency for Research on Cancer. Development of the REDEPICAN Guide has taken into account the context of the registries in Latin America and is a useful and innovative tool for improving the quality of PBCRs. Furthermore, it is ready for use in other countries and registries.
Schjødt, Inge; Nakano, Anne; Egstrup, Kenneth
AIM OF DATABASE: The aim of the Danish Heart Failure Registry (DHFR) is to monitor and improve the care of patients with incident heart failure (HF) in Denmark. STUDY POPULATION: The DHFR includes inpatients and outpatients (≥18 years) with incident HF. Reporting to the DHFR is mandatory......: The main variables recorded in the DHFR are related to the indicators for quality of care in patients with incident HF: performance of echocardiography, functional capacity (New York Heart Association functional classification), pharmacological therapy (angiotensin converting enzyme/angiotensin II...
Eldrup, Nikolaj; Cerqueira, Charlotte; de la Motte, Louise; Rathenborg, Lisbet Knudsen; Hansen, Allan K
Aim The Danish Vascular Registry (DVR), Karbase, is monitoring arterial and advanced vein interventions conducted at all vascular departments in Denmark. The main aim of the DVR is to improve the quality of treatment for patients undergoing vascular surgery in Denmark by using the registry for quality assessment and research. Study population All patients undergoing vascular interventions (surgical and endovascular) at any vascular department in Denmark are registered in the DVR. The DVR was initiated in 1989, and each year, ∼9,000 procedures are added. By January 2016, >180,000 procedures have been recorded. Since 2001, data completeness has been >90% (compared to the Danish National Patient Register). Main variables Variables include information on descriptive patient data (ie, age, sex, height, and weight) and comorbidity (ie, previous cardiovascular disease and diabetes). Process variable includes waiting time (time from event to medical contact and treatment) and the type of procedures conducted. Outcome variables for in-hospital complications (ie, wound complications, myocardial infarction, stroke, amputation, respiratory complications, and renal insufficiency) and 30-day patency are submitted. Variables for medical treatment (antithrombotic and statin treatment), amputation, and survival are extracted from nationwide, administrative registers. Conclusion The DVR reports outcome on key indicators for monitoring the quality at all vascular departments in Denmark for the purpose of quality improvement. Furthermore, data are available for research and are being used in international collaborations on changes in clinical practices. PMID:27822118
Cowan Anne E
Full Text Available Abstract Background Population-based registries have been promoted as an effective method to improve childhood immunization rates, yet rates of registry participation in the private sector are low. We sought to describe, through a national overview, the perspectives of childhood immunization providers in private practice regarding factors associated with participation or non-participation in immunization registries. Methods Two mailed surveys, one for 264 private practices identified as registry non-participants and the other for 971 identified as registry participants, from 15 of the 31 states with population-based statewide immunization registries. Frequency distributions were calculated separately for non-participants and participants regarding the physician-reported factors that influenced decisions related to registry participation. Pearson chi-square tests of independence were used to assess associations among categorical variables. Results Overall response rate was 62% (N = 756. Among non-participants, easy access to records of vaccines provided at other sites (N = 101, 68% and printable immunization records (N = 82, 55% were most often cited as "very important" potential benefits of a registry, while the most commonly cited barriers to participation were too much cost/staff time (N = 36, 38% and that the practice has its own system for recording and monitoring immunizations (N = 35, 37%. Among registry participants, most reported using the registry to input data on vaccines administered (N = 326, 87% and to review immunization records of individual patients (N = 302, 81%. A minority reported using it to assess their practice's immunization coverage (N = 110, 29% or generate reminder/recall notices (N = 54, 14%. Few participants reported experiencing "significant" problems with the registry; the most often cited was cost/staff time to use the registry (N = 71, 20%. Conclusion Most registry participants report active participation with few
Full Text Available Payam Dehghani,1 Varun Chopra,1 Ali Bell,2 Sheila Kelly,1 Lori Zulyniak,2 Jeff Booker,1 Rodney Zimmermann,1 William Semchuk,2 Asim N Cheema,3 Andrea J Lavoie1 1Prairie Vascular Research Network, University of Saskatchewan, Regina, SK, 2Regina Qu’Appelle Health Region, Regina, SK, 3St Michael’s Hospital, University of Toronto, Toronto, ON, Canada Background: As ticagrelor enters into clinical use for acute coronary syndrome, it is important to understand patient/physician behavior in terms of appropriate use, adherence, and event rates. Methods: The Saskatchewan Registry is a prospective, observational, multicenter cohort study that identifies consecutive patients started on ticagrelor. We aimed to evaluate both on- and off-label use, identify characteristics of patients who prematurely stop ticagrelor, and describe patient/physician behavior contributing to inappropriate stoppage of this medication. Results: From April 2012 to September 2013, 227 patients were initiated on ticagrelor, with a mean age of 62.2±12.1 years. The participants were 66% men and had a mean follow up of 157.4±111.7 days. Seventy-four patients (32.4% had off-label indications. Forty-seven patients (20.7% prematurely stopped ticagrelor and were more likely to be older, women, nonwhite, present with shock, and complain of dyspnea. Twenty-six of the 47 patients stopped ticagrelor inappropriately because of patient nonadherence (18 patients and physician advice (eight patients. A composite outcome event of death from vascular causes, myocardial infarction, or stroke occurred in 8.8% of the entire cohort and was more likely to occur in those older then 65 years, those presenting with cardiogenic shock, and those who prematurely stopped ticagrelor. Conclusion: In this real-world registry of patients started on ticagrelor, a third have off-label indications and a fifth prematurely stop the medication. Premature discontinuation was an independent predictor of major
Ferreira Pires, Luis; Wang, J.; van Oostrum, Arjen; Wijnhoven, Alphonsus B.J.M.
A service registry is a Service-Oriented Architecture (SOA) component that keeps a ‘catalogue’ of available services. It stores service specifications so that these specifications can be found by potential users. Discussions on the design of service registries currently focus on technical issues,
da Cunha-Bang, Caspar; Geisler, Christian Hartmann; Enggaard, Lisbeth
AIM: In 2008, the Danish National Chronic Lymphocytic Leukemia Registry was founded within the Danish National Hematology Database. The primary aim of the registry is to assure quality of diagnosis and care of patients with chronic lymphocytic leukemia (CLL) in Denmark. Secondarily, to evaluate...
... 50 Wildlife and Fisheries 8 2010-10-01 2010-10-01 false Registry process. 600.1410 Section 600.1410 Wildlife and Fisheries FISHERY CONSERVATION AND MANAGEMENT, NATIONAL OCEANIC AND ATMOSPHERIC... United States § 600.1410 Registry process. (a) A person may register through the NMFS web site at www...
... be shown where required on labels and markings of containers or cases filled at the wine premises... OF THE TREASURY LIQUORS WINE Establishment and Operations Application § 24.115 Registry number. Upon..., bonded wine cellar, or taxpaid wine bottling house. The registry number will be used in all...
Jørgensen, Marit Eika; Kristensen, Jette K.; Husted, Gitte Reventlov
Aim of the database: The aim of the Danish Adult Diabetes Registry (DADR) is to provide data from both the primary health care sector (general practice [GP]) and the secondary sector (specialized outpatient clinics) to assess the quality of treatment given to patients with diabetes. The indicators...... represent process and outcome indicators selected from the literature. Study population: The total diabetes population in Denmark is estimated to be ∼300,000 adult diabetes patients. Approximately 10% have type 1 diabetes, which is managed mainly in the secondary sector, and 90% have type 2 diabetes......, glucose-, blood pressure-, and lipid-lowering treatment (yes/no), insulin pump treatment (yes/ no), and date of last eye and foot examination. Descriptive data: In 2014, the annual report included data regarding over 38,000 patients from outpatient clinics, which is assumed to have included almost all...
Schjødt, Inge; Nakano, Anne; Egstrup, Kenneth
AIM OF DATABASE: The aim of the Danish Heart Failure Registry (DHFR) is to monitor and improve the care of patients with incident heart failure (HF) in Denmark. STUDY POPULATION: The DHFR includes inpatients and outpatients (≥18 years) with incident HF. Reporting to the DHFR is mandatory......: The main variables recorded in the DHFR are related to the indicators for quality of care in patients with incident HF: performance of echocardiography, functional capacity (New York Heart Association functional classification), pharmacological therapy (angiotensin converting enzyme/angiotensin II...... antagonist inhibitors, beta-blockers, and mineralocorticoid receptor antagonist), nonpharmacological therapy (physical training, patient education), 4-week readmission rate, and 1-year mortality. Furthermore, basic patient characteristics and prognostic factors (eg, smoking and alcohol) are recorded...
Harlan Carvey brings readers an advanced book on Windows Registry - the most difficult part of Windows to analyze in forensics! Windows Registry Forensics provides the background of the Registry to help develop an understanding of the binary structure of Registry hive files. Approaches to live response and analysis are included, and tools and techniques for postmortem analysis are discussed at length. Tools and techniques will be presented that take the analyst beyond the current use of viewers and into real analysis of data contained in the Registry. This book also has a DVD containing tools, instructions and videos.
Schwemer, Sebastian Felix
The link of lawful domain names to unlawful content is a phenomenon that until recently has not been very topical. Traditionally, domain registries have been off the radar of content-related debates. Enforcement efforts, public discourse and academic research have focused on other intermediaries...... such as Internet access service providers, hosting platforms, and websites that link to content. This article shows that in recent years, however, that the (secondary) liability of domain registries and registrars, and more specifically country code top-level domain registries (ccTLDs) for website content, has...... been tested in several EU Member States. The article investigates tendencies in the national lower-court jurisprudence and explores to what extent the liability exemption regime of the E-Commerce Directive applies to domain registries. The analysis concludes that whereas domain registries fall under...
Benson, Kevin; Plante, Ray; Auden, Elizabeth; Graham, Matthew; Greene, Gretchen; Hill, Martin; Linde, Tony; Morris, Dave; O`Mullane, Wil; Rixon, Guy; Stébé, Aurélien; Andrews, Kona; Benson, Kevin; Plante, Ray
Registries provide a mechanism with which VO applications can discover and select resources--e.g. data and services--that are relevant for a particular scientific problem. This specification defines the interfaces that support interactions between applications and registries as well as between the registries themselves. It is based on a general, distributed model composed of so-called searchable and publishing registries. The specification has two main components: an interface for searching and an interface for harvesting. All interfaces are defined by a standard Web Service Description Language (WSDL) document; however, harvesting is also supported through the existing Open Archives Initiative Protocol for Metadata Harvesting, defined as an HTTP REST interface. Finally, this specification details the metadata used to describe registries themselves as resources using an extension of the VOResource metadata schema.
Full Text Available Background: Central registry in psychiatry is being practiced in few countries and has been found useful in research and clinical management. Role of central registry has also expanded over the years. Materials and Methods: All accessible internet database Medline, Scopus, Embase were accessed from 1990 till date. Available data were systematically reviewed in structured manner and analyzed. Results: Central registry was found useful in epidemiological analysis, association studies, outcome studies, comorbidity studies, forensic issue, effective of medication, qualitative analysis etc., Conclusion: Central registry proves to be effective tool in quantitative and qualitative understanding of psychiatry practice. Findings of studies from central registry can be useful in modifying best practice and evidence based treatment in psychiatry.
da Cunha-Bang, Caspar; Geisler, Christian Hartmann; Enggaard, Lisbeth; Poulsen, Christian Bjørn; de Nully Brown, Peter; Frederiksen, Henrik; Bergmann, Olav Jonas; Pulczynski, Elisa Jacobsen; Pedersen, Robert Schou; Nielsen, Linda Højberg; Christiansen, Ilse; Niemann, Carsten Utoft
In 2008, the Danish National Chronic Lymphocytic Leukemia Registry was founded within the Danish National Hematology Database. The primary aim of the registry is to assure quality of diagnosis and care of patients with chronic lymphocytic leukemia (CLL) in Denmark. Secondarily, to evaluate adherence to national guidelines and to provide source data for research purposes. All patients diagnosed with CLL in Denmark from 2008 onward are included in the registry. Patients are followed in one of nine hematology centers. All centers participate in the registry and are all obliged to collect data. Predefined data are collected at the time of diagnosis, and follow-up at the time of significant events: treatment, progression, transplantation, and death. Parameters included in the International Workshop on Chronic Lymphocytic Leukaemia criteria for diagnosis, and for decision on treatment initiation as well as characteristics included in the CLL International Prognostic Index are collected. To ensure full coverage of Danish CLL patients in the registry, both continuous queries in case of missing data, and cross-referencing with the Danish National Patient Registry are performed. Data from the registry are published in an annual report summarizing the collected data, the overall survival for yearly cohorts, and the degree of data coverage. Per year approximately 450 new patients with CLL are registered in the registry, cumulative as of July 1, 2015, 3,082 patients have been registered. The Danish National CLL Registry is based within the Danish National Hematology Database. The registry covers a cohort of all patients diagnosed with CLL in Denmark since 2008. It forms the basis for quality assessment of CLL treatment in Denmark and offers a unique opportunity for population-based research.
Hertzum, Morten; Bansler, Jørgen P.; Havn, Erling C.
implementation, and provide three empirical illustrations of our model. We conclude that pilot implementation has much merit as an ISD technique when system performance is contingent on context. But we also warn developers that, despite their seductive conceptual simplicity, pilot implementations can...
Hertzum, Morten; Bansler, Jørgen P.; Havn, Erling C.
implementation and provide three empirical illustrations of our model. We conclude that pilot implementation has much merit as an ISD technique when system performance is contingent on context. But we also warn developers that, despite their seductive conceptual simplicity, pilot implementations can be difficult...
Poffley, Alison; Thomas, Emma; Grace, Sherry L; Neubeck, Lis; Gallagher, Robyn; Niebauer, Josef; O'Neil, Adrienne
Introduction Despite cardiac rehabilitation being recommended in clinical practice guidelines internationally these services are underutilised, programmes are not standardised and quality improvement methods and outcomes are rarely published. National registries are an important strategy to characterise service delivery, quality and outcomes, yet the number, type and components of national cardiac rehabilitation registries have not been reported. Aims To identify and describe national and international cardiac rehabilitation registries, and summarise their key features. Methods We systematically reviewed the literature reporting on cardiac rehabilitation registries at a national and international level. A search of four databases was conducted in July 2016, with two reviewers independently screening titles/abstracts and full texts for inclusion. Data were extracted from included studies, independently checked by a second reviewer and synthesised qualitatively. Results Eleven articles were included in the review comprising seven national registries and one international registry (of 12 European countries) for a total sample of 265,608 patients. Data were most commonly provided to the registry by a web-based application, and included individual-level data (i.e. sociodemographic characteristics, medical history, and clinical measurements). When reported, service-level data most commonly included wait times, programme enrolment and completion. The overarching governance, funding modes (e.g. industry ( n = 2), government ( n = 1)), and incentives for registry participation (e.g. benchmarking, financial reimbursement, or mandatory requirement) varied widely. Conclusion The use of national and international registries for characterising cardiac rehabilitation and providing a benchmark for quality improvement is in its early stages but shows promise for national and global benchmarking.
Li, Laura; Koranne, Rahul
There is little data on the long-term health outcomes of patients with neurological conditions treated at long-term acute care specialty hospitals. In order to learn more about these patients and the most effective way to care for them, Bethesda Hospital in St. Paul created a neuroscience research registry. The registry's target population is patients with complex neurological conditions such as aneurysm or intracranial bleed, stroke, seizures, delirium and confusion and traumatic brain injury. This article describes the development of the registry, which has enrolled 857 patients thus far, and what is being learned about those patients.
van Gijn, Jan; Gijselhart, Joost P
Dirk Hoogendoorn (1914-1990) was a solo general practitioner in the village of Wijhe (eastern part of the Netherlands) from 1941, during the time of the German occupation, until 1971. From the very beginning, he combined his practice with the recording of disease patterns. He first concentrated on infectious diseases, especially whooping cough, which was the subject of his doctoral thesis. He later set up registries in two regional hospitals. When his initiative expanded to a national organisation, he became its advisor. He nonetheless continued to produce statistics on a variety of disorders as well as on surgical procedures, even more so after his retirement. The subjects ranged from traffic accidents and tonsillectomies to the discrepancy between increased body height and the unchanging height of the tennis net, but he had the most affinity with the practice of obstetrics. He stirred up much emotion by showing that a decrease in perinatal mortality was proceeding slower in the Netherlands than in other European countries, especially by suggesting a causal relationship between this lag and the high rate of Dutch home deliveries. This debate has continued to this day.
This GIS dataset contains data on power plants, based on the Energy Information Administration's EIA-860 dataset and supplemented with data from EPA's Facility Registry Service (FRS) compiled from various EPA programs.
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...
Department of Veterans Affairs — The Veterans Affairs Central Cancer Registry (VACCR) receives and stores information on cancer diagnosis and treatment constraints compiled and sent in by the local...
U.S. Department of Health & Human Services — Linking Medicare, Medicaid, and Cancer Registry Data to Study the Burden of Cancers in West Virginia In the United States, the elderly carry an unequal burden of...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of non-hazardous waste...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of hazardous waste...
U.S. Environmental Protection Agency — This dataset contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link to the Oil...
Hardman, S.; Hughes, J. S.; Joyner, R.; Crichton, D.; Law, E.
The PDS Tool Registry enables search and discovery of tools, services, and APIs for working with data following the PDS standards. Tools and services have been submitted from the broad PDS community and multiple institutions.
U.S. Environmental Protection Agency — This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of sites that link to...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...
Kristensen, Anders Elgaard; Larsen, Jacob Moesgaard; Nielsen, Jens Cosedis
AIMS: The validity of registry data on defibrillator lead performance is described only sparsely, despite its clinical importance. This study investigated the validity of defibrillator lead performance registry data in a nationwide and population-based registry. METHODS AND RESULTS: We identified.......9% (95% CI: 85.2-90.2%) with a κ value of 0.82 (95% CI:0.78-0.86) representing an almost perfect match. CONCLUSION: The validity of data on defibrillator lead performance recorded in the DPIR is excellent for the specific types of lead intervention and good for the specific reasons for defibrillator lead...... intervention. The validity of the less detailed overall reasons for lead interventions commonly used to report lead performance is also excellent. These findings indicate high registry data quality appropriate for scientific analysis and industry-independent post-marketing surveillance....
Full Text Available In response to the growing role of personal support workers (PSWs in the delivery of health care services to Ontarians, the Ontario government has moved forward with the creation of a PSW registry. This registry will be mandatory for all PSWs employed by publicly funded health care employers, and has the stated objectives of better highlighting the work that PSWs do in Ontario, providing a platform for PSWs and employers to more easily access the labour market, and to provide government with information for human resources planning. In this paper we consider the factors that brought the creation of a PSW registry onto the Ontario government’s policy agenda, discuss how the registry is being implemented, and provide an analysis of the strengths and weaknesses of this policy change.
U.S. Environmental Protection Agency — The Substance Registry Services (SRS) is the authoritative resource for basic information about substances of interest to the U.S. EPA and its state and tribal...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...
... the registry questionnaire. You may try a different browser, or you may try from a different computer. You may also see this problem if you are in a high security environment where this is disabled by a network ...
Tai B; Hu L; Ghitza UE; Sparenborg S; VanVeldhuisen P; Lindblad R
Betty Tai,1 Lian Hu,2 Udi E Ghitza,1 Steven Sparenborg,1 Paul VanVeldhuisen,2 Robert Lindblad2 1Center for the Clinical Trials Network, National Institute on Drug Abuse, National Institutes of Health, Bethesda, MD, USA; 2The EMMES Corporation, Rockville, MD, USA Abstract: This commentary discusses the need for developing patient registries of substance use disorders (SUD) in general medical settings. A patient registry is a tool that documents the natural history of target diseases. Clinicia...
Parkinson’s Institute Sunnyvale, CA 94085-2934 This registry initiates a program of epidemiological assessments of PS among...Center. Alaska Native; Parkinson’s disease; Registry; Etiology; Epidemiology ; Ascertainment 8 23 June 2012 - 22 June 2013AnnualJuly 2013 ctanner...Investigator 4 A. Introduction Parkinsonism (PS) is a syndrome characterized by tremor , rigidity, slowness of movement, and problems with walking and
Awdish, R; Cajigas, H
Pulmonary arterial hypertension (PAH) is a subcategory of pulmonary hypertension (PH) that comprises a group of disorders with similar pulmonary vascular pathology. Though PH is common, the estimated incidence of IPAH is 1-3 cases per million, making it a rare disease. The hemodynamic definition of PAH is a mean pulmonary artery pressure at rest >OR = 25 mm Hg in the presence of a pulmonary capillary wedge pressure
Full Text Available Betty Tai,1 Lian Hu,2 Udi E Ghitza,1 Steven Sparenborg,1 Paul VanVeldhuisen,2 Robert Lindblad2 1Center for the Clinical Trials Network, National Institute on Drug Abuse, National Institutes of Health, Bethesda, MD, USA; 2The EMMES Corporation, Rockville, MD, USA Abstract: This commentary discusses the need for developing patient registries of substance use disorders (SUD in general medical settings. A patient registry is a tool that documents the natural history of target diseases. Clinicians and researchers use registries to monitor patient comorbidities, care procedures and processes, and treatment effectiveness for the purpose of improving care quality. Enactments of the Affordable Care Act 2010 and the Mental Health Parity and Addiction Equity Act 2008 open opportunities for many substance users to receive treatment services in general medical settings. An increased number of patients with a wide spectrum of SUD will initially receive services with a chronic disease management approach in primary care. The establishment of computer-based SUD patient registries can be assisted by wide adoption of electronic health record systems. The linkage of SUD patient registries with electronic health record systems can facilitate the advancement of SUD treatment research efforts and improve patient care. Keywords: substance use disorders, primary care, registry, electronic health records, chronic care model
Sherman, Simon; Shats, Oleg; Ketcham, Marsha A.; Anderson, Michelle A.; Whitcomb, David C.; Lynch, Henry T.; Ghiorzo, Paola; Rubinstein, Wendy S.; Sasson, Aaron R.; Grizzle, William E.; Haynatzki, Gleb; Feng, Jianmin; Sherman, Alexander; Kinarsky, Leo; Brand, Randall E.
The Pancreatic Cancer Collaborative Registry (PCCR) is a multi-institutional web-based system aimed to collect a variety of data on pancreatic cancer patients and high-risk subjects in a standard and efficient way. The PCCR was initiated by a group of experts in medical oncology, gastroenterology, genetics, pathology, epidemiology, nutrition, and computer science with the goal of facilitating rapid and uniform collection of critical information and biological samples to be used in developing diagnostic, prevention and treatment strategies against pancreatic cancer. The PCCR is a multi-tier web application that utilizes Java/JSP technology and has Oracle 10 g database as a back-end. The PCCR uses a “confederation model” that encourages participation of any interested center, irrespective of its size or location. The PCCR utilizes a standardized approach to data collection and reporting, and uses extensive validation procedures to prevent entering erroneous data. The PCCR controlled vocabulary is harmonized with the NCI Thesaurus (NCIt) or Systematized Nomenclature of Medicine-Clinical Terms (SNOMED-CT). The PCCR questionnaire has accommodated standards accepted in cancer research and healthcare. Currently, seven cancer centers in the USA, as well as one center in Italy are participating in the PCCR. At present, the PCCR database contains data on more than 2,700 subjects (PC patients and individuals at high risk of getting this disease). The PCCR has been certified by the NCI Center for Biomedical Informatics and Information Technology as a cancer Biomedical Informatics Grid (caBIG®) Bronze Compatible product. The PCCR provides a foundation for collaborative PC research. It has all the necessary prerequisites for subsequent evolution of the developed infrastructure from simply gathering PC-related data into a biomedical computing platform vital for successful PC studies, care and treatment. Studies utilizing data collected in the PCCR may engender new approaches
Uldall, P; Michelsen, Susan Ishøy; Topp, M
Cerebral palsy (CP) is the commonest disabling impairment in childhood, with a prevalence of 2-3 per 1000 live births. The Danish Cerebral Palsy Registry is a research registry that contains cases of CP from birth year 1925 and has estimated the birth prevalence since 1950. Data on children with ...
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
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.
Hurley, Donna S; Sukal-Moulton, Theresa; Gaebler-Spira, Deborah; Krosschell, Kristin J; Pavone, Larissa; Mutlu, Akmer; Dewald, Julius PA; Msall, Michael E
The aims of this study were to provide a comprehensive summary of the body of research disseminated by Cerebral Palsy (CP) registries and surveillance programs from January 2009 through May 2014 in order to describe the influence their results have on our overall understanding of CP. Secondly, registries/surveillance programs and the work they produced were evaluated and grouped using standardized definitions and classification systems. Method A systematic review search in PubMed, CINAH and Embase for original articles published from 1 January 2009 to 20 May 2014 originating from or supported by population based CP registries and surveillance programs or population based national registries including CP were included. Articles were grouped by 2009 World CP Registry Congress aim, registry/surveillance program classification, geographical region, and the International Classification of Function, Disability and Health (ICF) domain. Registry variables were assessed using the ICF-CY classification. Results Literature searches returned 177 articles meeting inclusion criteria. The majority (69%) of registry/surveillance program productivity was related to contributions as a Resource for CP Research. Prevention (23%) and Surveillance (22%) articles were other areas of achievement, but fewer articles were published in the areas of Planning (17%) and Raising the Profile of CP (2%). There was a range of registry/surveillance program classifications contributing to this productivity, and representation from multiple areas of the globe, although most of the articles originated in Europe, Australia, and Canada. The domains of the ICF that were primarily covered included body structures and function at the early stages of life. Encouragingly, a variety of CP registry/surveillance program initiatives included additional ICF domains of participation and environmental and personal factors. Interpretation CP registries and surveillance programs, including novel non-traditional ones
Nielsen, Lene Hüche; Nørgaard, Bjarne Linde; Tilsted, Hans-Henrik
BACKGROUND: As a subregistry to the Western Denmark Heart Registry (WDHR), the Western Denmark Cardiac Computed Tomography Registry (WDHR-CCTR) is a clinical database established in 2008 to monitor and improve the quality of cardiac computed tomography (CT) in Western Denmark. OBJECTIVE: We...... examined the content, data quality, and research potential of the WDHR-CCTR. METHODS: We retrieved 2008-2012 data to examine the 1) content; 2) completeness of procedure registration using the Danish National Patient Registry as reference; 3) completeness of variable registration comparing observed vs...... expected numbers; and 4) positive predictive values as well as negative predictive values of 19 main patient and procedure variables. RESULTS: By December 31, 2012, almost 22,000 cardiac CTs with up to 40 variables for each procedure have been registered. Of these, 87% were coronary CT angiography...
Østgård, Lene Sofie Granfeldt; Nørgaard, Jan Maxwell; Raaschou-Jensen, Klas Kræsten
AIM OF DATABASE: The main aim of the Danish National Acute Leukemia Registry (DNLR) was to obtain information about the epidemiology of the hematologic cancers acute myeloid leukemia (AML), acute lymphoblastic leukemia (ALL), and myelodysplastic syndrome (MDS). STUDY POPULATION: The registry...... was established in January 2000 by the Danish Acute Leukemia Group and has been expanded over the years. It includes adult AML patients diagnosed in Denmark since 2000, ALL patients diagnosed since 2005, and MDS patients diagnosed since 2010. The coverage of leukemia patients exceeds 99%, and the coverage of MDS...... years. To ensure this high coverage, completeness, and quality of data, linkage to the Danish Civil Registration System and the Danish National Registry of Patients, and several programmed data entry checks are used. CONCLUSION: The completeness and positive predictive values of the leukemia data have...
De Leede, E. M.; Sibinga Mulder, B. G.; Bastiaannet, E.
Care, is a platform aiming to harmonize cancer data collection and improve cancer care by feedback. After the prior launch of the projects on colorectal, breast and upper GI cancer, EURECCA's newest project is collecting data on pancreatic cancer in several European countries. Methods National cancer...... registries, as well as specific pancreatic cancer audits/registries, were invited to participate in EURECCA Pancreas. Participating countries were requested to share an overview of their collected data items. Of the received datasets, a shared items list was made which creates insight in similarities between...... data. Conclusions A list of 25 shared items on pancreatic cancer coming from eleven participating registries was created, providing a basis for future prospective data collection in pancreatic cancer treatment internationally....
Mann, Steven A; McCleskey, Brandi; Marques, Marisa B; Adamski, Jill
Apheresis was first performed as a therapeutic procedure in the 1950s. The first national therapeutic apheresis (TA) registry was established in Canada in 1981 and other national registries followed, including two attempts at establishing an international TA registry. There is no national registry in the United States. Our large, academic, tertiary hospital has a very active TA service. We created a TA database to track all procedures performed by the apheresis service by transferring data from paper appointment logs and the electronic medical records into a Microsoft Access database. Retrospective data from each TA procedure performed at UAB from January 1, 2003 through December 31, 2012 were entered, including the type of procedure, indication, date, and patient demographics. Microsoft Excel was used for data analysis. During the 10-year period, our TA service treated 1,060 patients and performed 11,718 procedures. Of these patients, 70% received therapeutic plasma exchange (TPE), 21% received extracorporeal photopheresis (ECP), 4.5% received red cell exchange (RCE), 4.2% received leukocytapheresis, and 0.6% underwent platelet depletion. Among the procedures, 54% were TPEs, 44% were ECPs, 1.3% were RCEs, 0.5% were leukocytaphereses, and 0.1% were platelet depletions. According to the current literature, national and international TA use is underreported. We believe that the UAB TA registry provides useful information about TA practices in our region and can serve as a model for other institutions. Furthermore, data from multiple institutional registries can be used for clinical research to increase the available evidence for the role of TA in various conditions. J. Clin. Apheresis 31:516-522, 2016. © 2015 Wiley Periodicals, Inc. © 2016 Wiley Periodicals, Inc.
Nielsen, Lene Hüche; Nørgaard, Bjarne Linde; Tilsted, Hans-Henrik
BACKGROUND: As a subregistry to the Western Denmark Heart Registry (WDHR), the Western Denmark Cardiac Computed Tomography Registry (WDHR-CCTR) is a clinical database established in 2008 to monitor and improve the quality of cardiac computed tomography (CT) in Western Denmark. OBJECTIVE: We......-CCTR, showed that coronary CT angiographies accounted for only 23% of all nonregistered cardiac CTs, indicating >90% completeness of coronary CT angiographies in the WDHR-CCTR. The completeness of individual variables varied substantially (range: 0%-100%), but was >85% for more than 70% of all variables. Using......, making it a valuable tool for clinical epidemiological research....
Napier, Kathryn R; Tones, Megan; Simons, Chloe; Heussler, Helen; Hunter, Adam A; Cross, Meagan; Bellgard, Matthew I
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.
A high mean-HbA1c value 3-15 months after diagnosis of type 1 diabetes in childhood is related to metabolic control, macroalbuminuria, and retinopathy in early adulthood--a pilot study using two nation-wide population based quality registries.
Samuelsson, Ulf; Steineck, Isabelle; Gubbjornsdottir, Soffia
Intensive treatment of patients with type 1 diabetes delays the onset of long-term complications. On the basis of the information from two nation-wide quality registers, we investigated to which extent HbA1c values 3-15 months after diagnosis in childhood are related to metabolic control, albuminuria, and retinopathy in early adulthood. In Sweden, physicians register all children and adolescents with type 1 diabetes mellitus in the Swedish Pediatric Quality Registry. After 18 yr of age, people with diabetes are followed by the Swedish National Diabetes Register. We identified 1543 children and adolescents with a mean age of 13.9 yr at diagnosis and a mean duration of type 1 diabetes mellitus of 7.1 yr. Children and adolescents with poor metabolic control (mean HbA1c ≥ 70 mmol/mol (8.6 %)) adjacent to diagnosis had a significantly higher mean HbA1c value years later as adults than did patients with a good metabolic control [metabolic group. Patients with a high mean HbA1c 3-15 months after diagnosis had significantly more often macroalbuminuria and retinopathy in early adulthood. Metabolic control adjacent to the diagnosis of type 1 diabetes in childhood or adolescence can predict metabolic control in early adulthood. It is therefore very important that pediatric diabetes teams identify key factors for successful early metabolic control. Actively using quality registries may be one such factor. © 2013 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.
This pilot greenhouse was built in collaboration with the "Association des Maraichers" of Geneva in the frame of the study for making use of the heat rejected as warm water by CERN accelerators and experiments. Among other improvements, more automated and precise regulation systems for heating and ventilation were developed. See also 8305598X.
Connelly, Luke B
The discipline of economics supplies principles that may contribute to the discourse about investments in trauma registries and the role of the public sector, as well as the optimal use of the datasets those investments create. Principles from production economics, information economics, and public economics are employed to explore the reasons that trauma registries may be prone to underfunding, relative to their value, and to describe a threat to value maximization. The typical production activities and cost structures of registries are analyzed, along with the way registries generate social benefits. Assuming that the purpose of a trauma registry is to maximize the value or social good it creates, a number of investment, governance, and pricing principles are then proposed. Trauma registries are multiproduct enterprises. They are generally characterized by large and indivisible fixed, joint costs, and relatively low marginal costs. This implies that registries are subject to strong economies of scale and scope. Additionally, because registry data are not depleted by use, the registry's output is, technically, nonrival in consumption. The value created by registries may be maximized when a marginal-cost pricing policy is adopted. This means that the optimal price schedule for access to trauma registry data are likely to be zero, or close to zero, for some users. The economic principles presented here complement the contributions from other disciplines in discussions about the establishment of new registries or about improving some aspects of existing registries.
Bak, Marie; Ibfelt, Else Helene; Stauffer Larsen, Thomas
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...
A health economist at CDC talks about a new tool for estimating how much it costs to run cancer registries in developing countries. Created: 11/21/2016 by National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP). Date Released: 11/21/2016.
Østgård, Lene Sofie Granfeldt; Nørgaard, Jan Maxwell; Raaschou-Jensen, Klas Kræsten; Pedersen, Robert Schou; Rønnov-Jessen, Dorthe; Pedersen, Per Troellund; Dufva, Inge Høgh; Marcher, Claus Werenberg; Nielsen, Ove Juul; Severinsen, Marianne Tang; Friis, Lone Smidstrup
The main aim of the Danish National Acute Leukemia Registry (DNLR) was to obtain information about the epidemiology of the hematologic cancers acute myeloid leukemia (AML), acute lymphoblastic leukemia (ALL), and myelodysplastic syndrome (MDS). The registry was established in January 2000 by the Danish Acute Leukemia Group and has been expanded over the years. It includes adult AML patients diagnosed in Denmark since 2000, ALL patients diagnosed since 2005, and MDS patients diagnosed since 2010. The coverage of leukemia patients exceeds 99%, and the coverage of MDS patients is currently 90%. Approximately, 250 AML patients, 25 ALL patients, and 230 MDS patients are registered in the DNLR every year. In January 2015, the registry included detailed patient characteristics, disease characteristics, treatment characteristics, and outcome data on more than 3,500 AML, 300 ALL, and 1,100 MDS patients. Many of the included prognostic variables have been found to be of high quality including positive predictive values and completeness exceeding 90%. These variables have been used in prognostic observational studies in the last few years. To ensure this high coverage, completeness, and quality of data, linkage to the Danish Civil Registration System and the Danish National Registry of Patients, and several programmed data entry checks are used. The completeness and positive predictive values of the leukemia data have been found to be high. In recent years, the DNLR has shown to be an important high-quality resource for clinical prognostic research.
Pettifer, S.; Thorne, D.; McDermott, P.; Attwood, T.; Baran, J.; Bryne, J.C.; Hupponen, T.; Mowbray, D.; Vriend, G.
SUMMARY: The EMBRACE Registry is a web portal that collects and monitors web services according to test scripts provided by the their administrators. Users are able to search for, rank and annotate services, enabling them to select the most appropriate working service for inclusion in their
Werner, Claudius; Lablans, Martin; Ataian, Maximilian
Primary ciliary dyskinesia (PCD) is a rare autosomal recessive disorder leading to chronic upper and lower airway disease. Fundamental data on epidemiology, clinical presentation, course and treatment strategies are lacking in PCD. We have established an international PCD registry to realise an u...
Treffert, Darold A; Rebedew, David L
A registry has been established to document certain characteristics on a sizeable worldwide sample of individuals with savant syndrome, a rare but remarkable condition in which persons with developmental disabilities, brain injury, or brain disease have some spectacular "islands" of skill or ability that stand in jarring, marked contrast to overall handicap. Of the 319 savants included in the registry, 90% are congenital savants, while 10% are acquired savants. The registry includes individuals from 33 countries, with 70% from the United States or Canada. Sex distribution was 79% male vs. 21% female (4:1). This report summarizes the findings in the congenital savant syndrome category of the registry. Among the individuals with congenital savant syndrome, the most common underlying disability was Autistic Spectrum Disorder (75%); various other central nervous system (CNS) disorders were present in the other 25%. Fifty-five percent possessed a single special skill, while 45% had multiple skills. Music was the most frequent principal skill followed by art, memory, mathematics, calendar calculating, language, visual-spatial/mechanical, athletic, computer, extrasensory perception, and other skills.
Allende-López, Aldo; Fajardo-Gutiérrez, Arturo
A cancer registry is to record the data which let us to know the epidemiology of neoplasm, but led us take a decision in medical policy about this health problem that benefit patients. In this paper we did a brief historical review about models and attempts for having a cancer registry in Mexico. However, since 1940 "the fight against cancer" was declared, we have not had a confident cancer registry today validated and built with data from whole the country. In 1982, the Registro Nacional del Cancer was created. The design and validation of a registration card in four hospitals were the main results. In 1988, the Registro Nacional del Cancer was reinforced with a computerized system for facilitation the data capture. In 1994, it was signed the first interinstitutional agreement that led to Registro Histopatol6gico de Neoplasias Malignas. In 1996, the Instituto Mexicano del Seguro Social established a cancer registry in children in Mexico with the intention to have data from this population.
Blazsó, Péter; Kákonyi, Kornél; Forster, Tamás; Sepp, Róbert
The Szeged cardiomyopathy and ion channel diseases registry aims to establish a representative disease-specific registry based on the recruitment of patients with different cardiomyopathies and ion channel diseases followed at the Cardiology Center, University of Szeged. The registry collects patient data on the main forms of primary cardiomyopathies (hypertrophic, dilated, restrictive, arrhythmogenic right ventricular, left ventricular non-compact, tako-tsubo cardiomyopathy) and ion channel diseases (long QT syndrome, short QT syndrome, Brugada syndrome, catecholaminergic polymorphic ventricular tachycardia). Patients with hypertrophic cardiomyopathy (388 patients) make up the largest group of patients in the registry. Patients with dilated cardiomyopathy (310 patients) and patients with the long QT syndrome (111 patients) form two other sizable groups. Analyzed data of the group of patients with hypertrophic cardiomyopathy indicate similar figures with regard to disease related mortality and morbidity and clinical parameters. Orv. Hetil., 2017, 158(3), 101-105.
Backus, Lisa I; Gavrilov, Sergey; Loomis, Timothy P; Halloran, James P; Phillips, Barbara R; Belperio, Pamela S; Mole, Larry A
The Department of Veterans Affairs (VA) has a system-wide, patient-centric electronic medical record system (EMR) within which the authors developed the Clinical Case Registries (CCR) to support population-centric delivery and evaluation of VA medical care. To date, the authors have applied the CCR to populations with human immunodeficiency virus (HIV) and hepatitis C virus (HCV). Local components use diagnosis codes and laboratory test results to identify patients who may have HIV or HCV and support queries on local care delivery with customizable reports. For each patient in a local registry, key EMR data are transferred via HL7 messaging to a single national registry. From 128 local registry systems, over 60,000 and 320,000 veterans in VA care have been identified as having HIV and HCV, respectively, and entered in the national database. Local and national reports covering demographics, resource usage, quality of care metrics and medication safety issues have been generated.
Full Text Available Periodic evaluation and monitoring the health and economic outcome of joint replacement surgery is a common and popular process under the territory of joint registries in many countries. In this article we introduce the methodology used for the foundation of the National Iranian Joint Registry (IJR with a joint collaboration of the Social Security Organization (SSO and academic research departments considering the requirements of the Iran’s Ministry of Health and Education.
Sim, Doo Sun; Jeong, Myung Ho
The Korea Acute Myocardial Infarction Registry (KAMIR) is the first nationwide registry that reflects current therapeutic approaches and acute myocardial infarction (AMI) management in Korea. The results of the KAMIR demonstrated different risk factors and responses to medical and interventional treatments. The results indicated that the incidence of ST-elevation myocardial infarction (STEMI) was relatively high, and that the prevalence of dyslipidemia was relatively low with higher triglycer...
Kassari, Penio; Papaioannou, Panagiotis; Billiris, Antonis; Karanikas, Haralampos; Eleftheriou, Stergiani; Thireos, Eleftherios; Manios, Yannis; Chrousos, George P; Charmandari, Evangelia
Obesity in childhood and adolescence represents a major health problem in our century. In Greece, more than 30-35% of children and adolescents are either overweight or obese. Using information and communication technologies, we developed a "National Registry for the Prevention and Management of Overweight and Obesity in Childhood and Adolescence" for guidance and training of Pediatricians and General Practitioners. The application supports interoperability with other national infrastructures and multi-layered security spanning preventive, detective and administrative controls. The Patient Summary dataset includes information on medical history, family history, medications, immunizations, clinical examination and laboratory findings, and appointment booking service. The application was launched in September 2015 and is accessible by: h t t p : //app.childhood-obesity. gr/. Based on the data that the doctor registers, the system calculates a personalized therapeutic algorithm that provides information on diet, physical exercise and sleep, as well as guidance on laboratory investigations and referral to specialized centres. A pilot study performed in 1,270 children and adolescents indicated that using this system resulted in a reduction of obesity rates by 30% and overweight rates by 35% within one year. This National eHealth System appears to be effective in the management of overweight and obesity in childhood and adolescence. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.
Saunders, K T; Langbaum, J B; Holt, C J; Chen, W; High, N; Langlois, C; Sabbagh, M; Tariot, P N
The Arizona Alzheimer's Consortium (AAC) created the Arizona Alzheimer's Registry, a screening and referral process for people interested in participating in Alzheimer's disease related research. The goals of the Registry were to increase awareness of Alzheimer's disease research and accelerate enrollment into AAC research studies. Participation was by open invitation to adults 18 and older. Those interested provided consent and completed a written questionnaire. A subset of Registrants underwent an initial telephone cognitive assessment. Referral to AAC sites was based on medical history, telephone cognitive assessment, and research interests. A total of 1257 people consented and 1182 underwent an initial cognitive screening. Earned media (38.7%) was the most effective recruitment strategy. Participants had a mean age of 68.1 (SD 10.6), 97% were Caucasian, had 15.2 (SD 2.7) mean years of education, and 60% were female. 30% reported a family history of dementia and 70% normal cognition. Inter-rater agreement between self-reported memory status and the initial telephone cognitive assessment had a kappa of 0.31-0.43. 301 were referred to AAC sites. IThe Registry created an infrastructure and process to screen and refer a high volume of eager Registrants. These methods were found to be effective at prescreening individuals for studies, which facilitated AAC research recruitment. The established infrastructure and experiences gained from the Registry have served as the prototype for the web-based Alzheimer's Prevention Registry, a national registry focusing on Alzheimer's disease prevention research.
Maret-Ouda, John; Tao, Wenjing; Wahlin, Karl; Lagergren, Jesper
All five Nordic countries (Denmark, Finland, Iceland, Norway and Sweden) have nationwide registries with similar data structure and validity, as well as personal identity numbers enabling linkage between registries. These resources provide opportunities for medical research that is based on large registry-based cohort studies with long and complete follow-up. This review describes practical aspects, opportunities and challenges encountered when setting up all-Nordic registry-based cohort studies. Relevant articles describing registries often used for medical research in the Nordic countries were retrieved. Further, our experiences of conducting this type of study, including planning, acquiring permissions, data retrieval and data cleaning and handling, and the possibilities and challenges we have encountered are described. Combining data from the Nordic countries makes it possible to create large and powerful cohorts. The main challenges include obtaining all permissions within each country, usually in the local language, and retrieving the data. These challenges emphasise the importance of having experienced collaborators within each country. Following the acquisition of data, data management requires the understanding of the differences between the variables to be used in the various countries. A concern is the long time required between initiation and completion. Nationwide Nordic registries can be combined into cohorts with high validity and statistical power, but the considerable expertise, workload and time required to complete such cohorts should not be underestimated.
... 42 Public Health 5 2010-10-01 2010-10-01 false Registry of nurse aides. 483.156 Section 483.156... That Must Be Met by States and State Agencies: Nurse Aide Training and Competency Evaluation, and Paid Feeding Assistants § 483.156 Registry of nurse aides. (a) Establishment of registry. The State must...
... 15 Commerce and Foreign Trade 3 2010-01-01 2010-01-01 false Registry of data users. 995.21 Section 995.21 Commerce and Foreign Trade Regulations Relating to Commerce and Foreign Trade (Continued... § 995.21 Registry of data users. (a) CED or CEVAD shall maintain a registry of customers receiving NOAA...
... 37 Patents, Trademarks, and Copyrights 1 2010-07-01 2010-07-01 false Visual Arts Registry. 201.25... AND PROCEDURES GENERAL PROVISIONS § 201.25 Visual Arts Registry. (a) General. This section prescribes the procedures relating to the submission of Visual Arts Registry Statements by visual artists and...
Leitsalu, Liis; Alavere, Helene; Tammesoo, Mari-Liis; Leego, Erkki; Metspalu, Andres
The Estonian population-based biobank, with 52,000 participants' genetic and health data, is the largest epidemiological cohort in the Baltic region. Participants were recruited through a network of medical professionals throughout Estonia (population 1.34 million). Unique legislation as well as a broad consent form give the Estonian Genome Center, a research institute of the University of Tartu, permission to re-contact participants and to retrieve participants' data from national registries and databases. In addition to two re-contacting projects to update the health data of participants, extensive clinical characterizations have been retrieved from national registries and hospital databases regularly since 2010. Acquiring data from electronic health records and registries has provided a means to update and enhance the database of the Genome Center in a timely manner and at low cost. The resulting database allows a wide spectrum of genomic and epidemiological research to be conducted with the aim of benefitting public health. Future plans include linking the genome center database with the national health information system through X-road and exchanging data in real time, as well as using the genetic data and the technical infrastructure available for piloting personalized medicine in Estonia.
Full Text Available Abstract Background Trauma is a major health problem in the United Arab Emirates (UAE as well as worldwide. Trauma registries provide large longitudinal databases for analysis and policy improvement. We aim in this paper to report on the development and evolution of a national trauma registry using a staged approach by developing a single-center registry, a two-center registry, and then a multi-center registry. The three registries were established by developing suitable data collection forms, databases, and interfaces to these databases. The first two registries collected data for a finite period of time and the third is underway. The steps taken to establish these registries depend on whether the registry is intended as a single-center or multi-center registry. Findings Several issues arose and were resolved during the development of these registries such as the relational design of the database, whether to use a standalone database management system or a web-based system, and the usability and security of the system. The inclusion of preventive medicine data elements is important in a trauma registry and the focus on road traffic collision data elements is essential in a country such as the UAE. The first two registries provided valuable data which has been analyzed and published. Conclusions The main factors leading to the successful establishment of a multi-center trauma registry are the development of a concise data entry form, development of a user-friendly secure web-based database system, the availability of a computer and Internet connection in each data collection center, funded data entry personnel well trained in extracting medical data from the medical record and entering it into the computer, and experienced personnel in trauma injuries and data analysis to continuously maintain and analyze the registry.
Rafnsson, V.; Hrafnkelsson, J.; Tulinius, H.
OBJECTIVES—To describe the cancer pattern in a cohort of commercial pilots by follow up through the Icelandic Cancer Registry. METHODS—This is a retrospective cohort study of 458 pilots with emphasis on subcohort working for an airline operating on international routes. A computerised file of the cohort was record linked to the Cancer Registry by making use of personal identification numbers. Expected numbers of cancer cases were calculated on the basis of number of person-years and incidences of cancer at specific sites for men provided by the Cancer Registry. Numbers of separate analyses were made according to different exposure variables. RESULTS—The standardised incidence ratio (SIR) for all cancers was 0.97 (95% confidence interval (95% CI) 0.62 to 1.46) in the total cohort and 1.16 (95% CI 0.70 to 1.81) among those operating on international routes. The SIR for malignant melanoma of the skin was 10.20, 95% CI 3.29 to 23.81 in the total cohort and 15.63, 95% CI 5.04 to 36.46 in the restricted cohort. Analyses according to number of block-hours and radiation dose showed that malignant melanomas were found in the subgroups with highest exposure estimates, the SIRs were 13.04 and 28.57 respectively. The SIR was 25.00 for malignant melanoma among those who had been flying over five time zones. CONCLUSIONS—The study shows a high occurrence of malignant melanoma among pilots. It is open to discussion what role exposure of cosmic radiation, numbers of block-hours flown, or lifestyle factors—such as possible excessive sunbathing—play in the aetiology of cancer among pilots. This calls for further and more powerful studies. The excess of malignant melanoma among those flying over five time zones suggests that the importance of disturbance of the circadian rhythm should be taken into consideration in future studies. Keywords: cancer registry; malignant melanoma of the skin; cosmic radiation; block-hours; time zones PMID:10810099
Koch-Henriksen, N; Rasmussen, S; Stenager, E
The Danish Multiple Sclerosis Registry was formally established in 1956 but started operating in 1949 with a nationwide prevalence survey. Since then, the Registry has continued collecting data on new and old cases of multiple sclerosis (MS) or suspected MS from multiple sources. The Registry...... has formerly been estimated at about 90%, higher for cohorts with older onset and lower for cohorts with onset close to follow-up. The estimated validity of the diagnosis for autopsy cases classified as definite MS in the Registry is 94%. A long-term nationwide Registry has proved to be a valuable...
Pratesi, Simone; Dani, Carlo; Raimondi, Francesco; Romagnoli, Costantino
to monitor the incidence of cases of kernicterus and severe hyperbilirubinemia in Italy over time, and to describe each single registered event with sufficient information in order to identify one or more possible failures in the management of jaundice. the Task Force on hyperbilirubinemia of the Italian Society of Neonatology will draw up national guidelines for management of jaundice in the newborn and a national registry of kernicterus and hyperbilirubinemia for newborns with a gestational age greater than 34. the choice of the inclusion criteria for the registry and the minimum information necessary to describe each single event registered are reported and will be discussed at the national congress of the Italian Society of Neonatology next October 2012.
Hansen, Steinbjørn; Nielsen, Jan; Laursen, René J
BACKGROUND: The Danish Neuro-Oncology Registry (DNOR) is a nationwide clinical cancer database that has prospectively registered data on patients with gliomas since January 2009. The purpose of this study was to describe the establishment of the DNOR and further to evaluate the database...... Pathology Registry. The data validity of important clinical variables was evaluated by a random sample of 100 patients from the DNOR using the medical records as reference. RESULTS: A total of 2241 patients were registered in the DNOR by December 2014 with an overall patient completeness of 92 %, which...... of patient registration was very high (92 %) and the validity of the most important patient data was good. The DNOR is a newly established national database, which is a reliable source for future scientific studies and clinical quality assessments among patients with gliomas....
Guðmundsdóttir, Eva María; Hrafnkelsson, Jón; Rafnsson, Vilhjalmur
Background: To evaluate cancer incidence among licenced commercial pilots in association with cosmic radiation. Methods: Cohort study where ionizing radiation dose of cosmic radiation was estimated from airline data and software program and cancer incidence was obtained by record linkage with nation-wide cancer registry. All licenced commercial male airline pilots were followed from 1955 to 2015, ever or never employed at airline with international routes. Standardized incidence r...
Pettifer, S; Thorne, D; McDermott, P; Attwood, T; Baran, J; Bryne, J C; Hupponen, T; Mowbray, D; Vriend, G
The EMBRACE Registry is a web portal that collects and monitors web services according to test scripts provided by the their administrators. Users are able to search for, rank and annotate services, enabling them to select the most appropriate working service for inclusion in their bioinformatics analysis tasks. Web site implemented with PHP, Python, MySQL and Apache, with all major browsers supported. (www.embraceregistry.net).
experience in design of clinical trials and observational studies, and has published more than 200 articles in peer-review journals. He has served on...Statistics Team Leader at the DCC. She is also currently the Principal Investigator of the Pediatric Cardiomyopathy Registry (PCMR) Data Coordinating...PsycINFO database for articles related to the prevalence, epidemiology, or screening of PTSD among armed forces personnel and veterans. We identified
Healthcare registries, otherwise known in Sweden as national quality registries (NQRs), have progressed from being a patient-focused system supporting medical results to become the basis of a health policy steering instrument called regional comparisons (RCs). This article seeks to explain RCs as an unintended consequence of the NQR development, by utilizing the concepts of policy entrepreneurs and streams of impact: the problem stream (problem perceived), the policy stream (what is valid), and the political stream (governmental objectives). The empirical contribution lies in insights on how the RCs have developed as an unintended consequence of entrepreneurial deliberate action in the process of creating NQRs. These findings are based on documents, interviews, and previous research in the social sciences. The article also argues for a critical understanding of public knowledge management (PKM) related to experiences in the development of NQRs regarding how to use knowledge in healthcare government. This article highlights how knowledge generated in quality systems based on registries could imply a stronger role for authorities in exerting control over the medical profession. It also discusses the potential use of research evidence on NQRs as a base for more efficient policymaking. © The Author 2016. Published by Oxford University Press. All rights reserved. For Permissions, please email: firstname.lastname@example.org.
Khawla Abdulla Alghafli
Full Text Available The recovery of digital evidence of crimes from storage media is an increasingly time consuming process as the capacity of the storage media is in a state of constant growth. It is also a difficult and complex task for the forensic investigator to analyse all of the locations in the storage media. These two factors, when combined, may result in a delay in bringing a case to court. The concept of this paper is to start the initial forensic analysis of the storage media in locations that are most likely to contain digital evidence, the Windows Registry. Consequently, the forensic analysis process and the recovery of digital evidence may take less time than would otherwise be required. In this paper, the Registry structure of Windows 7 is discussed together with several elements of information within the Registry of Windows 7 that may be valuable to a forensic investigator. These elements were categorized into five groups which are system, application, networks, attached devices and the history lists. We have discussed the values of identified elements to a forensic investigator. Also, a tool was implemented to perform the function of extracting these elements and presents them in usable form to a forensics investigator.
Ekure, Ekanem N; Bode-Thomas, Fidelia; Sadoh, Wilson E; Orogade, Adeola A; Otaigbe, Barbara E; Ujunwa, Fortune; Sani, Usman M; Asani, Mustafa; Animasahun, Adeola B; Ogunkunle, Oluwatoyin O
Congenital heart defects (CHDs) are common birth defects with significant impact on morbidity and mortality. We aimed to compare regional patterns of CHDs in Nigeria using a registry-based approach. Children with echocardiography-confirmed CHDs at 17 medical centers across the country were enrolled in a pilot National Pediatric Cardiac Registry from January to December 2014. A total of 1,296 children (52.9% male; median age 0.9 years) with CHDs were enrolled. Patients enrolled in Northern Nigeria constituted 34.6% of the study population and were older compared to those enrolled from Southern Nigeria (2.9 ± 3.6 vs 2.4 ± 3.5 years; P = .02). Ventricular septal defects were significantly more prevalent in the North (37.4%) compared with the South (18.5%; P < .0001), while severe CHDs were more prevalent in the South ( P = .004). Of the 208 (16.0%) children who received corrective cardiac intervention, only 43 (20.7%) of them had the intervention done in country. More patients in the South received intervention compared to the North (19.02% vs 10.5%; P < .0001). This is the first prospective, registry-based, multicenter study of CHDs in Nigerian children. We demonstrate important differences between the Northern and the Southern geographical regions of the country in terms of age at diagnosis, type, and severity of lesion as well as access to cardiac surgery. The findings demonstrate the utility of a national CHDs registry for understanding clinical epidemiology of CHDs in low- and middle-income countries and its potential to serve as a basis for research and planning.
Daniel H. Solomon
Full Text Available Abstract Background The collection of routine clinical data in the setting of research registries can serve an important role in understanding real world care. However, relatively little is known about the patient experience in registries, motivating us to survey patients enrolled in two chronic disease registries. Methods We conducted similar surveys in two disease-based registries based at one academic medical center in the US. One group of patients with rheumatoid arthritis (RA had been enrolled in a registry, and we focused on retention factors. In a second group of patients with inflammatory bowel disease (IBD recently enrolled or considering enrollment, we examined factors that would influence their enrollment and willingness to answer frequent questionnaires and give biospecimens. The surveys were analyzed using descriptive statistics and the two cohorts were compared using nonparametric and chi-square tests. Results We received 150 (50% completed surveys from RA and 169 (63% from IBD patients. Mean age of subjects was 62 years in RA and 43 in IBD with more women respondents with RA (83% than IBD (62%. The two groups described very similar factors as the top three motivations for participation: desire to help others, desire to improve care of own disease, and ease of volunteering. Preferred methods of surveying included mail, e-mail, but telephone was not favored; age was an important correlate of this preference. Respondents preferred surveys either every 1–3 months (28.7% RA and 55.0% IBD or every 4–6 months (50.7% RA and 29.0% IBD. They differed in the preference for payment for answering surveys with 68.0% with RA answering that no payment was necessary but only 36.1% with IBD felt similarly. Conclusions Patients engaged in clinical registries demonstrate a high level of commitment to improve care and many report a willingness to answer questions relatively frequently.
Solomon, Daniel H; Shadick, Nancy A; Weinblatt, Michael E; Frits, Michelle; Iannaccone, Christine; Zak, Agnes; Korzenik, Joshua R
The collection of routine clinical data in the setting of research registries can serve an important role in understanding real world care. However, relatively little is known about the patient experience in registries, motivating us to survey patients enrolled in two chronic disease registries. We conducted similar surveys in two disease-based registries based at one academic medical center in the US. One group of patients with rheumatoid arthritis (RA) had been enrolled in a registry, and we focused on retention factors. In a second group of patients with inflammatory bowel disease (IBD) recently enrolled or considering enrollment, we examined factors that would influence their enrollment and willingness to answer frequent questionnaires and give biospecimens. The surveys were analyzed using descriptive statistics and the two cohorts were compared using nonparametric and chi-square tests. We received 150 (50%) completed surveys from RA and 169 (63%) from IBD patients. Mean age of subjects was 62 years in RA and 43 in IBD with more women respondents with RA (83%) than IBD (62%). The two groups described very similar factors as the top three motivations for participation: desire to help others, desire to improve care of own disease, and ease of volunteering. Preferred methods of surveying included mail, e-mail, but telephone was not favored; age was an important correlate of this preference. Respondents preferred surveys either every 1-3 months (28.7% RA and 55.0% IBD) or every 4-6 months (50.7% RA and 29.0% IBD). They differed in the preference for payment for answering surveys with 68.0% with RA answering that no payment was necessary but only 36.1% with IBD felt similarly. Patients engaged in clinical registries demonstrate a high level of commitment to improve care and many report a willingness to answer questions relatively frequently.
Matsuda, Tomohiro; Sobue, Tomotaka
Cancer registration in Japan has a long history spanning over 60 years; the first population-based cancer registry was established in Miyagi prefecture in 1951. The progress made in the regional population-based cancer registries in terms of standardization and quality improvement during the 10 years of the third comprehensive strategy for cancer control was highlighted in the history of cancer registration in Japan. However, there were still weak points regarding local government-oriented cancer registries that remained, e.g., the reporting of cancer cases to the population-based cancer registries was not a mandatory task for medical institutions. After the Cancer Control Act in 2006, the Act on Promotion of Cancer Registries was finally enacted in Japan on December 6, 2013. According to that Act, hospital managers must report information on any primary cancer that was first diagnosed in their institutions from January 1, 2016 to the prefectural governors. Given the increasing number of cases and amount of information recorded, it would have been almost impossible to maintain our cancer registries using the same system, and changes were required to obtain reliable cancer statistics. This was particularly important in Japan, because the country is facing a hyper-aging society, with two to three million cancer patients requiring entry of detailed information. We appreciate the long history of the Japanese cancer registry, but it is necessary to make dramatic changes to bring the registry up to date and to be able to track the increasing amount of information.
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
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.
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
Tamarozzi, F; Rossi, P; Galati, F; Mariconti, M; Nicoletti, G J; Rinaldi, F; Casulli, A; Pozio, E; Brunetti, E
Cystic echinococcosis (CE), a worldwide zoonosis, is highly endemic in southern and eastern Europe. Its actual prevalence is unknown due to the lack of efficient reporting systems designed to take into account the particular features of the disease. Neglect of CE makes diagnosis and clinical management difficult outside referral centres, with inconsistencies in clinical practice and often unnecessary procedures carried out that have associated risks and costs. The Italian registry of CE (RIEC) is a prospective multicentre registry of CE patients seen from January 2012 in Italian health centres; data are voluntarily submitted to the registry. Its aims are to show the prevalence of CE in Italy, bring the importance of this infection to the attention of health authorities, encourage public health policies towards its control, and stimulate biological, epidemiological and clinical research on CE. From January 2012 to February 2014, a total 346 patients were enrolled in 11 centres, outnumbering national reports of many CE-endemic European countries. We discuss preliminary data and challenges of the RIEC, template for the European registry of CE, which has been implemented within the Seventh Framework Programme project HERACLES (Human cystic Echinococcosis ReseArch in CentraL and Eastern Societies) since September 2014.
Myhre, Sonja L; Kaye, Jane; Bygrave, Lee A; Aanestad, Margunn; Ghanem, Buthaina; Mechael, Patricia; Frøen, J Frederik
The limited availability of maternal and child health data has limited progress in reducing mortality and morbidity among pregnant women and children. Global health agencies, leaders, and funders are prioritizing strategies that focus on acquiring high quality health data. Electronic maternal and child health registries (eRegistries) offer a systematic data collection and management approach that can serve as an entry point for preventive, curative and promotive health services. Due to the highly sensitive nature of reproductive health information, careful consideration must be accorded to privacy, access, and data security. In the third paper of the eRegistries Series, we report on the current landscape of ethical and legal governance for maternal and child health registries in developing countries. This research utilizes findings from two web-based surveys, completed in 2015 that targeted public health officials and health care providers in 76 countries with high global maternal and child mortality burden. A sample of 298 public health officials from 64 countries and 490 health care providers from 59 countries completed the online survey. Based on formative research in the development of the eRegistries Governance Guidance Toolkit, the surveys were designed to investigate topics related to maternal and child health registries including ethical and legal issues. According to survey respondents, the prevailing legal landscape is characterized by inadequate data security safeguards and weak support for core privacy principles. Respondents from the majority of countries indicated that health information from medical records is typically protected by legislation although legislation dealing specifically or comprehensively with data privacy may not be in place. Health care provider trust in the privacy of health data at their own facilities is associated with the presence of security safeguards. Addressing legal requirements and ensuring that privacy and data security
Kaye, Wendy E; Wagner, Laurie; Wu, Ruoming; Mehta, Paul
Our objective was to evaluate the completeness of the United States National ALS Registry (Registry). We compared persons with ALS who were passively identified by the Registry with those actively identified in the State and Metropolitan Area ALS Surveillance project. Cases in the two projects were matched using a combination of identifiers, including, partial social security number, name, date of birth, and sex. The distributions of cases from the two projects that matched/did not match were compared and Chi-square tests conducted to determine statistical significance. There were 5883 ALS cases identified by the surveillance project. Of these, 1116 died before the Registry started, leaving 4767 cases. We matched 2720 cases from the surveillance project to those in the Registry. The cases identified by the surveillance project that did not match cases in the Registry were more likely to be non-white, Hispanic, less than 65 years of age, and from western states. The methods used by the Registry to identify ALS cases, i.e. national administrative data and self-registration, worked well but missed cases. These findings suggest that developing strategies to identify and promote the Registry to those who were more likely to be missing, e.g. non-white and Hispanic, could be beneficial to improving the completeness of the Registry.
J Church, MBCHB
SUMMARY: the Cleveland Clinic approach to hereditary colorectal cancer is described. This is multidisciplinary, involving several specialties and both genetic counseling and mental health services within the registry.
Gimsing, Peter; Holmström, Morten O; Klausen, Tobias Wirenfelt; Andersen, Niels Frost; Gregersen, Henrik; Pedersen, Robert Schou; Plesner, Torben; Pedersen, Per Trøllund; Frederiksen, Mikael; Frølund, Ulf; Helleberg, Carsten; Vangsted, Annette; de Nully Brown, Peter; Abildgaard, Niels
The Danish National Multiple Myeloma Registry (DMMR) is a population-based clinical quality database established in January 2005. The primary aim of the database is to ensure that diagnosis and treatment of plasma cell dyscrasia are of uniform quality throughout the country. Another aim is to support research. Patients are registered with their unique Danish personal identification number, and the combined use of DMMR, other Danish National registries, and the Danish National Cancer Biobank offers a unique platform for population-based translational research. All newly diagnosed patients with multiple myeloma (MM), smoldering MM, solitary plasmacytomas, and plasma cell leukemia in Denmark are registered annually; ~350 patients. Amyloid light-chain amyloidosis, POEMS syndrome (polyneuropathy, organomegaly, endocrinopathy, monoclonal gammopathy, and skin changes syndrome), monoclonal gammopathy of undetermined significance and monoclonal gammopathy of undetermined significance with polyneuropathy have been registered since 2014. The main registered variables at diagnosis are patient demographics, baseline disease characteristics, myeloma-defining events, clinical complications, prognostics, first- and second-line treatments, treatment responses, progression free, and overall survival. Up to June 2015, 2,907 newly diagnosed patients with MM, 485 patients with smoldering MM, 64 patients with plasma cell leukemia, and 191 patients with solitary plasmacytomas were registered. Registration completeness of new patients is ~100%. A data validation study performed in 2013-2014 by the Danish Myeloma Study Group showed >95% data correctness. The DMMR is a population-based data validated database eligible for clinical, epidemiological, and translational research.
This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link to the Clean Air Markets Division Business System (CAMDBS). Administered by the EPA Clean Air Markets Division, within the Office of Air and Radiation, CAMDBS supports the implementation of market-based air pollution control programs, including the Acid Rain Program and regional programs designed to reduce the transport of ozone. FRS identifies and geospatially locates facilities, sites or places subject to environmental regulations or of environmental interest. Using vigorous verification and data management procedures, FRS integrates facility data from EPA's national program systems, other federal agencies, and State and tribal master facility records and provides EPA with a centrally managed, single source of comprehensive and authoritative information on facilities. This data set contains the subset of FRS integrated facilities that link to CAMDBS facilities once the CAMDBS data has been integrated into the FRS database. Additional information on FRS is available at the EPA website https://www.epa.gov/enviro/facility-registry-service-frs.
Shats, Oleg; Goldner, Whitney; Feng, Jianmin; Sherman, Alexander; Smith, Russell B; Sherman, Simon
A multicenter, web-based Thyroid Cancer and Tumor Collaborative Registry (TCCR, http://tccr.unmc.edu) allows for the collection and management of various data on thyroid cancer (TC) and thyroid nodule (TN) patients. The TCCR is coupled with OpenSpecimen, an open-source biobank management system, to annotate biospecimens obtained from the TCCR subjects. The demographic, lifestyle, physical activity, dietary habits, family history, medical history, and quality of life data are provided and may be entered into the registry by subjects. Information on diagnosis, treatment, and outcome is entered by the clinical personnel. The TCCR uses advanced technical and organizational practices, such as (i) metadata-driven software architecture (design); (ii) modern standards and best practices for data sharing and interoperability (standardization); (iii) Agile methodology (project management); (iv) Software as a Service (SaaS) as a software distribution model (operation); and (v) the confederation principle as a business model (governance). This allowed us to create a secure, reliable, user-friendly, and self-sustainable system for TC and TN data collection and management that is compatible with various end-user devices and easily adaptable to a rapidly changing environment. Currently, the TCCR contains data on 2,261 subjects and data on more than 28,000 biospecimens. Data and biological samples collected by the TCCR are used in developing diagnostic, prevention, treatment, and survivorship strategies against TC.
Full Text Available Lene Rahr-Wagner, Martin Lind Department of Orthopaedic Surgery, Division of Sports Surgery, Aarhus University Hospital, Aarhus, Denmark Abstract: The Danish Knee Ligament Reconstruction Registry was established in 2005 as a web-based nationwide clinical database with the purpose of improving the monitoring and quality of both primary and revision knee ligament reconstructions in Denmark. All primary and revision anterior and posterior cruciate ligament reconstructions as well as collateral ligament and multiligament reconstructions are recorded. Main variables include sex, age, cause of injury, objective ligament instability, and surgical data, such as affected ligament, graft- and implant choice, operation technique among other things. The operating surgeon prospectively collects the data. Hence, detailed preoperative, intraoperative, and 1-year follow-up data are recorded by the operating surgeon using a standardized form and a secured Internet portal. The number of procedures registered in the database each year is ~2,500 and the first 9 years, in total, 22,775 procedures have been registered. Since the beginning of the database multiple papers have been published in international peer-reviewed journals, improving the knowledge of patients treated with knee ligament reconstruction surgery. This paper reviews the content, organization, and published research from the Danish Knee Ligament Reconstruction Registry. Keywords: ligament reconstruction, anterior cruciate ligament, operation technique, database, graft choice, femoral tunnel drilling, patient-reported outcome measure
Kosmidis, Dimitrios; Koutsouki, Sotiria; Lampiri, Klairi; Nagy, Eva Ottilia; Papaioannou, Vasilios; Pneumatikos, Ioannis; Anastassopoulos, George
Intensive care electronic registries have been instrumental in quality measurement, improvement, and assurance of intensive care. In this article, the development and pilot implementation of the Intensive Care Unit Quality Management Registry are described, with a particular focus on monitoring the quality and operational cost in an adult ICU at a northern Greek state hospital. A relational database was developed for a hospital ICU so that qualitative and financial data are recorded for further analysis needed for planning quality care improvement and enhanced efficiency. Key features of this database registry were low development cost, user friendliness, maximum data security, and interoperability in existing hospital information systems. The database included patient demographics, nursing and medical parameters, and quality and performance indicators as established in many national registries worldwide. Cost recording was based on a mixed approach: at patient level ("bottom-up" method) and at department level ("top-down" method). During the pilot phase of the database operation, regular monitoring of quality and cost data revealed several fields of quality excellence, while indicating room for improvement for others. Parallel recording and trending of multiple parameters showed that the database can be utilized for optimum ICU quality and cost management and also for further research purposes by nurses, physicians, and administrators.
Shea Kimberly M
Full Text Available Abstract Background Population-based electronic immunization registries create the possibility of using registry data to conduct vaccine effectiveness studies which could have methodological advantages over traditional observational studies. For study validity, the base population would have to be clearly defined and the immunization status of members of the population accurately recorded in the registry. We evaluated a city-wide immunization registry, focusing on its potential as a tool to study pertussis vaccine effectiveness, especially in adolescents. Methods We conducted two evaluations – one in sites that were active registry participants and one in sites that had implemented an electronic medical record with plans for future direct data transfer to the registry – of the ability to match patients' medical records to registry records and the accuracy of immunization records in the registry. For each site, records from current pediatric patients were chosen randomly. Data regarding pertussis-related immunizations, clinic usage, and demographic and identifying information were recorded; for 11–17-year-old subjects, information on MMR, hepatitis B, and varicella immunizations was also collected. Records were then matched, when possible, to registry records. For records with a registry match, immunization data were compared. Results Among 350 subjects from sites that were current registry users, 307 (87.7% matched a registry record. Discrepancies in pertussis-related data were common for up-to-date status (22.6%, number of immunizations (34.7%, dates (10.2%, and formulation (34.4%. Among 442 subjects from sites that planned direct electronic transfer of immunization data to the registry, 393 (88.9% would have matched a registry record; discrepancies occurred frequently in number of immunizations (11.9%, formulation (29.1%, manufacturer (94.4%, and lot number (95.1%. Inability to match and immunization discrepancies were both more common
Full Text Available Henrik Toft Sørensen, Timothy L LashDepartment of Clinical Epidemiology, Aarhus University Hospital, DK-8000 Aarhus, DenmarkFor many decades, cancer registries have been a cornerstone in monitoring cancer occurrence in different populations. Cancer registries in the Nordic countries are characterized by a high level of completeness and excellent data quality.1 Cancer diagnoses are often validated through several procedures, with documentation of clinical evidence for the diagnosis. Cancer registries have proven very useful in monitoring cancer incidence, contributing significantly to our understanding of its origin and development. Some registries also have been used to monitor cancer survival at the population level.1
Lingner, Heidrun; Aumann, Ines; Wacker, Margarethe; Kreuter, Michael; Leidl, Reiner; von der Schulenburg, J-Matthias Graf; Welte, Tobias
Reliable current information is needed for daily patient care and the health system, but comprehensive data, especially from primary care, are scarce and/or hard to access. The BeoNet Register-Database (BNR) aims to depict quality of medical care in Germany using routine data and with no additional documentation or costs for GPs. Registry design, data structure and database use will be demonstrated using chronic obstructive lung disease (COPD) as an example. The BNR is moving through pilot- and roll-out phases. Participating practices provide standardized information about (1) master data (2) practice profile (3) infrastructure and documentation systems. The routinely documented data will be pseudonymized before transmission via standardized secure interfaces to the registry database. Practices can participate in studies in cooperation with BNR if informed consent is obtained from the patients. The registry data will be linked with questionnaires on health care utilization, quality of life and disease-specific parameters. Researchers and physicians can access quasi anonymized data in specific datasets extracted from the registry. Regular automatic data quality checks and feedback from GPs, patients and researchers enhance the quality of the registry. Performance and data analysis are continuously optimized. The data security concept has been approved and ethical approval is on hand. GPs, pediatricians and pneumologists from Hanover, Munich and Heidelberg participated in the pilot phase. The registry database currently holds 98497 patient IDs and related information. BNR contains more than the standard billing data collected by health insurers. The data are applicable to a wide range of health practices, health care and economics and disease development questions. Questionnaires have been generated, tested and are being distributed. First descriptive analyses of prevalence, age and gender have been performed. Quality and validity checks have been implemented. 2016
The cancer registry profession has grown dramatically since its inception in 1926. Certified tumor registrars (CTRs) have become an integral part of the cancer care team by providing quality cancer data for research, statistical purposes, public health, and cancer control. In addition, CTRs have been found to be valuable in other cancer and health-related fields. Based on the need for high-quality, accurate data, the National Cancer Registrars Association (NCRA), the certification body for CTRs, has increased the educational requirement for eligibility for the CTR certification exam. This has resulted in fewer individuals who are able to meet the requirements for CTR certification. In addition, the existing cancer registry workforce is, on average, older than other allied health professions, and therefore will face an increasing number of retirements in the next few years. The high demand for CTRs, the decreased pool of CTR-eligible applicants, and the aging cancer registry workforce has resulted in an existing shortage that will only get worse as the population ages and the incidence of cancer increases. Health information management (HIM) students are well suited to pursuing further training in the cancer registry field and gaining the CTR credential. HIM students or new graduates have the needed skill set and education to pursue a cancer registry career. There are many avenues HIM educational programs can take to encourage students to pursue CTR certification and a cancer registry career. Including cancer registry functions in courses throughout the HIM curriculum, bringing in cancer registry speakers, encouraging networking, and promoting the cancer registry field and profession in general are just a few of the methods that HIM programs can use to raise awareness of and promote a cancer registry career to their students. Illinois State University has used these methods and has found them to be successful in encouraging a percentage of their graduates to pursue
Full Text Available Peter Gimsing,1 Morten O Holmström,2 Tobias Wirenfelt Klausen,3 Niels Frost Andersen,4 Henrik Gregersen,5 Robert Schou Pedersen,6 Torben Plesner,7 Per Trøllund Pedersen,8 Mikael Frederiksen,9 Ulf Frølund,2 Carsten Helleberg,3 Annette Vangsted,1 Peter de Nully Brown,1 Niels Abildgaard,10 On behalf of the Danish Myeloma Study Group 1Department of Hematology, Rigshospitalet, Copenhagen, 2Department of Hematology, Roskilde Sygehus, Roskilde, 3Department of Hematology, Herlev Hospital, Copenhagen, 4Department of Hematology, Aarhus University Hospital, Aarhus, 5Department of Hematology, Aalborg University Hospital, Aalborg, 6Department of Hematology, Holstebro Hospital, Holstebro, 7Department of Hematology, Vejle Hospital, Vejle, 8Department of Hematology, Hospital of Southwestern Jutland, Esbjerg, 9Department of Internal Medicine, Hospital of Southern Jutland, Aabenraa, 10Department of Hematology, Odense University Hospital, Odense, Denmark Aim: The Danish National Multiple Myeloma Registry (DMMR is a population-based clinical quality database established in January 2005. The primary aim of the database is to ensure that diagnosis and treatment of plasma cell dyscrasia are of uniform quality throughout the country. Another aim is to support research. Patients are registered with their unique Danish personal identification number, and the combined use of DMMR, other Danish National registries, and the Danish National Cancer Biobank offers a unique platform for population-based translational research.Study population: All newly diagnosed patients with multiple myeloma (MM, smoldering MM, solitary plasmacytomas, and plasma cell leukemia in Denmark are registered annually; ~350 patients. Amyloid light-chain amyloidosis, POEMS syndrome (polyneuropathy, organomegaly, endocrinopathy, monoclonal gammopathy, and skin changes syndrome, monoclonal gammopathy of undetermined significance and monoclonal gammopathy of undetermined significance with
Full Text Available Paul J Hauptman,1 Arthur Greenberg,2 Joseph G Verbalis,3 Alpesh Amin,4 Samuel Sigal,5 Jun Chiong,6 Sandra Chase,7 Joseph Dasta81Saint Louis University School of Medicine, St Louis, MO, USA; 2Duke University Medical Center, Durham, NC, USA; 3Georgetown University Medical Center, Washington, DC, USA; 4University of California, Irvine, CA, USA; 5New York University Langone Medical Center, New York, NY, USA; 6Loma Linda University, Loma Linda, CA, USA; 7Otsuka America Pharmaceutical, Inc, Princeton, NJ, USA; 8University of Texas at Austin, TX, USABackground: Hyponatremia is a prevalent condition in patients hospitalized across a broad range of conditions, including heart failure, cirrhosis, and the syndrome of inappropriate antidiuretic hormone (SIADH secretion. Whether present on admission or developing during hospitalization, hyponatremia has been associated with increased mortality, longer hospital stays, and higher costs. Little is known, however, about its management and outcomes outside of clinical trial settings.Methods: The Hyponatremia Registry (HN Registry is a prospective, observational, multicenter, multinational study of patients hospitalized with either hypervolemic hyponatremia (cirrhosis and heart failure in the United States or euvolemic hyponatremia (SIADH in both the United States and Europe. Study enrollment began in September 2010 at community, tertiary, and academic medical centers. Overall, the HN Registry is expected to enroll >5,000 patients with hyponatremia, at >280 sites. Data will be used to characterize demographic and clinical characteristics of patients hospitalized with hyponatremia, evaluate the comparative effectiveness of available treatment modalities, and document and compare length of hospital stay as a reflection of resource use associated with hospital management.Discussion: Despite better understanding of the clinical consequences, economic impact, and prognostic significance of euvolemic and hypervolemic
Lurie, Fedor; Obi, Andrea; Schul, Marlin; Hofmann, Lawrence V; Kasper, Gregory; Wakefield, Thomas
Patient registries are beneficial in that they allow the collection of prospective data focused on a specific medical issue. These registries give providers a "real-world" view of patient outcomes. Many medical disciplines have a long history of developing and using patient registries; the first patient registry for chronic venous disease in the United States was launched in 2011, fairly recently in comparison. Registries included in this review were identified by surveying members of major academic societies that focus on the care of chronic venous disease and by searching MEDLINE and Embase databases using Ovid interface. Medical directors of four of the five databases available in the United States completed a standard questionnaire, and the answers served as the basis for this review. This review is not a comparison of registries; it does, however, describe the common and unique features of four venous registries currently available in the United States with the purpose of increasing awareness of and fostering participation in these registries. Copyright © 2017 Society for Vascular Surgery. Published by Elsevier Inc. All rights reserved.
van Dongen, Thijs T C F|info:eu-repo/dai/nl/357301714; de Graaf, Johan|info:eu-repo/dai/nl/413649393; Huizinga, Eelco P; Champion, Howard R; Hoencamp, Rigo; Leenen, Luke P H|info:eu-repo/dai/nl/071390596
BACKGROUND: Structural collection of data from combat injuries is important to improve provided care and the outcome of (combat) casualties. Trauma registries are used in civilian and military health care systems for systematic administration of injury data. However, these registries often use
... 14 Aeronautics and Space 1 2010-01-01 2010-01-01 false FAA Aircraft Registry. 49.11 Section 49.11 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION AIRCRAFT RECORDING OF AIRCRAFT TITLES AND SECURITY DOCUMENTS General § 49.11 FAA Aircraft Registry. To be eligible for recording...
... 14 Aeronautics and Space 1 2010-01-01 2010-01-01 false FAA Aircraft Registry. 47.19 Section 47.19 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION AIRCRAFT AIRCRAFT REGISTRATION General § 47.19 FAA Aircraft Registry. Each application, request, notification, or other...
Ostgård, Lene Sofie Granfeldt; Nørgaard, Jan Maxwell; Severinsen, Marianne Tang
The Danish National Acute Leukemia Registry (DNLR) has documented coverage of above 98.5%. Less is known about the quality of the recorded data.......The Danish National Acute Leukemia Registry (DNLR) has documented coverage of above 98.5%. Less is known about the quality of the recorded data....
... Federal Motor Carrier Safety Administration 49 CFR Parts 390 and 391 RIN 2126-AA97 National Registry of... National Registry of Certified Medical Examiners (NRCME) published on December 1, 2008. In the comments on...'s certificate had been issued to a commercial motor vehicle driver by a medical examiner listed on...
van der Veer, Sabine; Cornet, Ronald; de Jonge, Evert
Due to its complexity intensive care is vulnerable to errors. On the ICU adults of the AMC (Amsterdam, The Netherlands) the available registries used for error reporting did not give insight in the occurrence of unwanted events, and did not lead to preventive measures. Therefore, a new registry has
van der Veer, Sabine; Cornet, Ronald; de Jonge, Evert
Due to its complexity intensive care is vulnerable to errors. On the ICU Adults of the AMC (Amsterdam, the Netherlands) the available registries used for error reporting did not give insight in the occurrence of unwanted events, and did not lead to preventive measures. Therefore, a new registry has
Toplak, N.; Frenkel, J.; Ozen, S.; Lachmann, H.J.; Woo, P.; Kone-Paut, I.; Benedetti, F. de; Neven, B.; Hofer, M.; Dolezalova, P.; Kummerle-Deschner, J.; Touitou, I.; Hentgen, V.; Simon, A.; Girschick, H.; Rose, C.; Wouters, C.; Vesely, R.; Arostegui, J.; Stojanov, S.; Ozgodan, H.; Martini, A.; Ruperto, N.; Gattorno, M.
OBJECTIVE: To report on the demographic data from the first 18 months of enrollment to an international registry on autoinflammatory diseases in the context of the Eurofever project. METHODS: A web-based registry collecting baseline and clinical information on autoinflammatory diseases and related
Svensson, Jannet; Cerqueira, Charlotte; Kjærsgaard, Per
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......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 (diabetes...
advantage of reporting indicators is the related multidisciplinary discussions giving a better understanding of what actually is going on, thereby facilitating the work on adjusting the national guidelines in the Danish Neuro-Oncology Group. CONCLUSION: The establishment of DNOR has optimized the quality...... in handling primary brain tumor patients in Denmark by reporting indicators and facilitating a better multidisciplinary collaboration at a national level. DNOR provides a valuable resource for research.......AIM OF DATABASE: The Danish Neuro-Oncology Registry (DNOR) was established by the Danish Neuro-Oncology Group as a national clinical database. It was established for the purpose of supporting research and development in adult patients with primary brain tumors in Denmark. STUDY POPULATION: DNOR has...
Andersen, Mads Varis Nis; Hjortdal, Jesper Østergaard; Schielke, Katja Christina
Aim of database: To monitor the development of diabetic eye disease in Denmark and to evaluate the accessibility and effectiveness of diabetic eye screening programs with focus on interregional variations. Target population: The target population includes all patients diagnosed with diabetes....... Denmark (5.5 million inhabitants) has ~320,000 diabetes patients with an annual increase of 27,000 newly diagnosed patients. The Danish Registry of Diabetic Retinopathy (DiaBase) collects data on all diabetes patients aged ≥18 years who attend screening for diabetic eye disease in hospital eye departments...... and in private ophthalmological practice. In 2014-2015, DiaBase included data collected from 77,968 diabetes patients. Main variables: The main variables provide data for calculation of performance indicators to monitor the quality of diabetic eye screening and development of diabetic retinopathy. Data...
Svensson, Jannet; Cerqueira, Charlotte; Kjærsgaard, Per
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 (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...
Pino Sánchez, F I; Ballesteros Sanz, M A; Cordero Lorenzana, L; Guerrero López, F
Traumatic disease is a major public health concern. Monitoring the quality of services provided is essential for the maintenance and improvement thereof. Assessing and monitoring the quality of care in trauma patient through quality indicators would allow identifying opportunities for improvement whose implementation would improve outcomes in hospital mortality, functional outcomes and quality of life of survivors. Many quality indicators have been used in this condition, although very few ones have a solid level of scientific evidence to recommend their routine use. The information contained in the trauma registries, spread around the world in recent decades, is essential to know the current health care reality, identify opportunities for improvement and contribute to the clinical and epidemiological research. Copyright © 2014 Elsevier España, S.L.U. and SEMICYUC. All rights reserved.
Svensson, Jannet; Cerqueira, Charlotte; Kjærsgaard, Per
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......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...... changed dramatically with more children treated intensively with multiple daily injections, insulin pumps, and increased number of self-monitored blood glucose values per day. These initiatives have resulted in a significant improvement in HbA1c over the years and a decrease in the number of children...
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
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 profile, metabolic syndrome, and adherence to treatment. The primary outcomes will be hospitalization due to hypertensive 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.
Paulo César Brandão Veiga Jardim
Full Text Available Abstract Background: 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. Objective: 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. Methods: 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 < 1 year. Evaluations will be performed at baseline and after 1 year of follow-up. The parameters that will be evaluated include anthropometric data, lifestyle habits, BP levels, lipid profile, metabolic syndrome, and adherence to treatment. The primary outcomes will be hospitalization due to hypertensive 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. Results: The results will be presented after the final evaluation, which will occur at the end of a 1-year follow-up. Conclusion: The analysis of this registry will improve the knowledge and optimize the treatment of hypertension in Brazil, as a way of
Aloufi, Bader; Alshagathrah, Fahad; Househ, Mowafa
Registries are an essential source of information for clinical and non-clinical decision-makers; because they provide evidence for post-market clinical follow-up and early detection of safety signals for biomedical implants. Yet, many of todays biomedical implants registries are facing a variety of challenges relating to a poorly designed dataset, the reliability of inputted data and low clinician and patient participation. The purpose of this paper is to present a best practice model for the implementation and use of biomedical implants registries to monitor the safety and effectiveness of implantable medical devices. Based on a literature review and an analysis of multiple national relevant registries, we identified six factors that address contemporary challenges and are believed to be the keys for building a successful biomedical implants registry, which include: sustainable development, international comparability, data reliability, purposeful design, ease of patient participation, and collaborative development at the national level.
Belcaro, G; Shu, H; Luzzi, R; Dugall, M; Ippolito, E; Cesarone, M R; Corsi, M; Feragalli, B
This registry study aimed to evaluate the use of Pycnogenol® (pine bark extract), an anti-inflammatory, anti-oxidant and anti-edema natural compound, on symptoms of common cold. Main targets were the evaluation in otherwise healthy subjects of signs/symptoms, the reduction in days of disease, and the prevention of complications. All subjects used the "best management" for colds and one group added Pycnogenol® capsules (50 mg, bid/die) from day zero. The resulting registry groups were comparable. A total of 70 subjects used Pycnogenol® and 76 acted as controls. The number of days with a perceived cold affecting the patients was reduced in the supplement group (3.1;0.4 days) in comparison with controls (4.2;0.2). Lost working days were significantly decreased in the supplement group (0.55;0.3 versus 0.67;0.3 in controls). The need to use any other compound (on demand basis; OTC products) to manage symptoms and the occurrence of any clinically significant complications were significantly lower in the Pycnogenol® group. The most frequent complications were the extension of the cold to a period longer than 4 days, a tracheal extension and a bronchial involvement. Pycnogenol® was significantly effective in reducing the number of complications. The daily evolution of the "pillar cold signs" indicates a significantly faster resolution in the supplement group. With supplementation the decrease in symptom scores appears to be significantly more important. Pycnogenol® supplementation appears to make regression faster for all symptoms in comparison with controls. In this pilot registry, Pycnogenol® appears to decrease symptoms of cold and shorten its course also preventing some complications.
de Vries, Esther; Pardo, Constanza; Arias, Nelson; Bravo, Luis Eduardo; Navarro, Edgar; Uribe, Claudia; Yepez, María Clara; Jurado, Daniel; Garci, Luz Stella; Piñeros, Marion; Edwards, Patrick; Beebe, Maggie Cole; Tangka, Florence; Subramanian, Sujha
Maintaining population-based registries requires adequate and sustained resources; however, to date there has been no systematic evaluation to identify the resource needs for cancer registration in most countries, including Colombia. A systematic assessment of the costs can quantify the funding required and identify processes to improve efficiency of cancer registries. The Centers for Disease Control and Prevention's (CDC's) International Registry Costing Tool (IntRegCosting Tool) was tailored specifically for the Colombian registries and was used to collect resource use data from five regional population-based cancer registries: Barranquilla, Bucaramanga, Cali, Manizales, and Pasto. The registries provided cost data for the year 2013 and cancer cases corresponding to the year 2010. We identified an almost threefold variation in the average cost per case (77,932 to 214,082 Colombian pesos or US $41 to US $113 in 2013) across the registries, but there were also substantial differences in data collection approaches, types of data collected, and activities performed. Cost per inhabitant varied between 95 and 415 Colombian pesos (US $0.05 to US $0.22). Between 20% and 45% of the total cost was due to fixed cost activities. The detailed economic information presented in this study constitutes a valuable source of activity-based cost data that registries can use to compare operations, assess key factors that lead to differences in cost per case, and identify potential approaches to improve efficiencies. Furthermore, the knowledge gained from studying the Colombian registries can help inform the planning and operations of other registries in the region. Published by Elsevier Ltd.
Sim, Doo Sun; Jeong, Myung Ho
The Korea Acute Myocardial Infarction Registry (KAMIR) is the first nationwide registry that reflects current therapeutic approaches and acute myocardial infarction (AMI) management in Korea. The results of the KAMIR demonstrated different risk factors and responses to medical and interventional treatments. The results indicated that the incidence of ST-elevation myocardial infarction (STEMI) was relatively high, and that the prevalence of dyslipidemia was relatively low with higher triglyceride and lower high-density lipoprotein cholesterol levels. Percutaneous coronary intervention (PCI) rates were high for both STEMI and non-ST-elevation myocardial infarction (NSTEMI) with higher use of drug-eluting stents (DESs). DES were effective and safe without increased risk of stent thrombosis in Korean AMI patients. Triple antiplatelet therapy, consisting of aspirin, clopidogrel, and cilostazol, was effective in preventing adverse clinical outcomes after PCI. Statin therapy was effective in Korean AMI patients, including those with very low levels of low-density lipoprotein cholesterol and those with cardiogenic shock. The KAMIR score had a greater predictive value than Thrombolysis in Myocardial Infarction (TIMI) and Global Registry of Acute Coronary Events (GRACE) scores for long-term mortality in AMI patients. Based on these results, the KAMIR will be instrumental for establishing new therapeutic strategies and effective methods for secondary prevention of AMI and guidelines for Asian patients. Copyright © 2017. The Korean Society of Cardiology.
The Korea Acute Myocardial Infarction Registry (KAMIR) is the first nationwide registry that reflects current therapeutic approaches and acute myocardial infarction (AMI) management in Korea. The results of the KAMIR demonstrated different risk factors and responses to medical and interventional treatments. The results indicated that the incidence of ST-elevation myocardial infarction (STEMI) was relatively high, and that the prevalence of dyslipidemia was relatively low with higher triglyceride and lower high-density lipoprotein cholesterol levels. Percutaneous coronary intervention (PCI) rates were high for both STEMI and non-ST-elevation myocardial infarction (NSTEMI) with higher use of drug-eluting stents (DESs). DES were effective and safe without increased risk of stent thrombosis in Korean AMI patients. Triple antiplatelet therapy, consisting of aspirin, clopidogrel, and cilostazol, was effective in preventing adverse clinical outcomes after PCI. Statin therapy was effective in Korean AMI patients, including those with very low levels of low-density lipoprotein cholesterol and those with cardiogenic shock. The KAMIR score had a greater predictive value than Thrombolysis in Myocardial Infarction (TIMI) and Global Registry of Acute Coronary Events (GRACE) scores for long-term mortality in AMI patients. Based on these results, the KAMIR will be instrumental for establishing new therapeutic strategies and effective methods for secondary prevention of AMI and guidelines for Asian patients. PMID:29035427
National Oceanic and Atmospheric Administration, Department of Commerce — Pilot boarding areas are locations at sea where pilots familiar with local waters board incoming vessels to navigate their passage to a destination port. Pilotage is...
Hollak, Carla E. M.; Aerts, Johannes M. F. G.; Aymé, Ségolène; Manuel, Jeremy
Orphan drugs are often approved under exceptional circumstances, requiring submission of additional data on safety and effectiveness through registries. These registries are mainly focused on one drug only and data is frequently incomplete. Some registries also address phenotypic heterogeneity and
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
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 facilitate
Gordon, Hannah; Langholz, Ebbe
The 2015 EpiCom survey evaluated population, patient, and research registries across Europe. Information was collected from 38 countries. The registries included those falling within the remit of national statistics, hospital databases, twin and multiplex registries, inflammatory bowel disease [IBD......] registries and biobanks, and cancer and surgical registries. The scale and nature of registries were investigated, and where possible a contact detail for each registry was obtained.The survey demonstrated 33 birth and death registers across Europe. It also highlighted ethical and legal challenges in linking......-JCC online] depicts active registries in each of the participating countries....
Czeizel, A E
The Hungarian Congenital Abnormality Registry was established in 1962 based on obligatory notification of cases with congenital abnormalities by physicians. However, continuous and expert evaluation of data started in 1970 when the Registry was moved to the National Institute of Public Health. Later several other systems, including the Nationwide Evaluation of Multimalformed Infants, Case-Control Surveillance of Congenital Abnormalities, and Surveillance of Germinal Mutations, were based on the Registry. Data and results of the first 25 years of the Registry are evaluated from three different aspects: 1) evaluation of the originally planned and later adopted missions of the Registry; 2) quality control of the Registry is based on the proportion of misdiagnoses, completeness of notifications, and pathogenetically oriented classification; 3) outcome evaluation indicated the different quality of recorded data in lethal, severe, and mild congenital abnormalities. The data base of the Registry was appropriate to estimate the proportion of preventable congenital abnormalities due to the four different preventive programs and to evaluate the pregnancy outcomes after the Chernobyl nuclear power plant accident.
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
Pampel, Heinz; Vierkant, Paul; Elger, Kirsten; Bertelmann, Roland; Witt, Michael; Schirmbacher, Peter; Rücknagel, Jessika; Kindling, Maxi; Scholze, Frank; Ulrich, Robert
re3data.org - the registry of research data repositories lists over 1,400 research data repositories from all over the world making it the largest and most comprehensive online catalog of research data repositories on the web. The registry is a valuable tool for researchers, funding organizations, publishers and libraries. re3data.org provides detailed information about research data repositories, and its distinctive icons help researchers to easily identify relevant repositories for accessing and depositing data sets . Funding agencies, like the European Commission  and research institutions like the University of Bielefeld  already recommend the use of re3data.org in their guidelines and policies. Several publishers and journals like Copernicus Publications, PeerJ, and Nature's Scientific Data recommend re3data.org in their editorial policies as a tool for the easy identification of appropriate data repositories to store research data. Project partners in re3data.org are the Library and Information Services department (LIS) of the GFZ German Research Centre for Geosciences, the Computer and Media Service at the Humboldt-Universität zu Berlin, the Purdue University Libraries and the KIT Library at the Karlsruhe Institute of Technology (KIT). After its fusion with the U.S. American DataBib in 2014, re3data.org continues as a service of DataCite from 2016 on. DataCite is the international organization for the registration of Digital Object Identifiers (DOI) for research data and aims to improve their citation. The poster describes the current status and the future plans of re3data.org.  Pampel H, et al. (2013) Making Research Data Repositories Visible: The re3data.org Registry. PLoS ONE 8(11): e78080. doi:10.1371/journal.pone.0078080.  European Commission (2015): Guidelines on Open Access to Scientific Publications and Research Data in Horizon 2020. Available: http://ec.europa.eu/research/participants/data/ref/h2020/grants_manual/hi/oa_pilot/h2020-hi-oa-pilot
Greenlees, Ruth; Neville, Amanda; Addor, Marie-Claude
EUROCAT is a network of population-based congenital anomaly registries providing standardized epidemiologic information on congenital anomalies in Europe. There are three types of EUROCAT membership: full, associate, or affiliate. Full member registries send individual records of all congenital...... anomalies covered by their region. Associate members transmit aggregate case counts for each EUROCAT anomaly subgroup by year and by type of birth. This article describes the organization and activities of each of the current 29 full member and 6 associate member registries of EUROCAT....
Barisic, Ingeborg; Boban, Ljubica; Greenlees, Ruth
: The study was based on data collected during 1990-2011 by 34 registries. The registries are population-based and use multiple sources of information to collect data on all types of birth using standardized definitions, methodology and coding. Diagnostic criteria for inclusion in the study were the presence......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...
Francone, Marco [Department of Radiological, Oncological and Pathological Sciences, Sapienza University of Rome (Italy); Di Cesare, Ernesto, E-mail: email@example.com [Dipartimento di Scienze Cliniche Applicate e Biotecnologie, Università di L’Aquila (Italy); Cademartiri, Filippo [Cardio-Vascular Imaging Unit, Giovanni XXIII Hospital, Monastier di Treviso, TV (Italy); Erasmus Medical Center University, Rotterdam (Netherlands); Pontone, Gianluca [IRCCS Centro Cardiologico Monzino (Italy); Lovato, Luigi [Policlinico S. Orsola Bologna (Italy); Matta, Gildo [Azienda ospedaliera G Brotzu Cagliari (Italy); Secchi, Francesco [IRCCS Policlinico San Donato, Radiology Unit, Milan (Italy); Maffei, Erica [Cardio-Vascular Imaging Unit, Giovanni XXIII Hospital, Monastier di Treviso, TV (Italy); Erasmus Medical Center University, Rotterdam (Netherlands); Pradella, Silvia [Azienda Ospedaliera Universitaria Careggi (Italy); Carbone, Iacopo [Department of Radiological, Oncological and Pathological Sciences, Sapienza University of Rome (Italy); Marano, Riccardo [Policlinico Gemelli, Università Cattolica Roma (Italy); Bacigalupo, Lorenzo [Ospedale Galliera, Genova (Italy); Chiodi, Elisabetta [Ospedale S. Anna Ferrara (Italy); Donato, Rocco [Azienda Ospedaliera Universitaria G. Martino, Me (Italy); Sbarbati, Stefano [Ospedale Madre Giuseppina Vannini, Roma (Italy); De Cobelli, Francesco [IRCCS S. Raffaele, Università Vita Salute, Milano (Italy); Di Renzi, Paolo [Fate Bene Fratelli Isola tiberina, Roma (Italy); Ligabue, Guido; Mancini, Andrea [Azienda Ospedaliera-Universitaria Policlinico di Modena (Italy); Palmieri, Francesco [Diparimento di Diagnostica per immagini e radiologia interventistica, Ospedale S. Maria delle Grazie, Pozzuoli, Napoli (Italy); and others
Objectives: Forty sites were involved in this multicenter and multivendor registry, which sought to evaluate indications, spectrum of protocols, impact on clinical decision making and safety profile of cardiac magnetic resonance (CMR). Materials and methods: Data were prospectively collected on a 6-month period and included 3376 patients (47.2 ± 19 years; range 1–92 years). Recruited centers were asked to complete a preliminary general report followed by a single form/patient. Referral physicians were not required to exhibit any specific certificate of competency in CMR imaging. Results: Exams were performed with 1.5 T scanners in 96% of cases followed by 3 T (3%) and 1 T (1%) magnets and contrast was administered in 84% of cases. The majority of cases were performed for the workup of inflammatory heart disease/cardiomyopathies representing overall 55.7% of exams followed by the assessment of myocardial viability and acute infarction (respectively 6.9% and 5.9% of patients). In 49% of cases the final diagnosis provided was considered relevant and with impact on patient's clinical/therapeutic management. Safety evaluation revealed 30 (0.88%) clinical events, most of which due to patient's preexisting conditions. Radiological reporting was recorded in 73% of exams. Conclusions: CMR is performed in a large number of centers in Italy with relevant impact on clinical decision making and high safety profile.
Tremblay, Mark S; Feng, Min; Garriguet, Didier; Ball, Geoff D C; Buchholz, Annick; Chanoine, Jean-Pierre; Lambert, Marie; Morrison, Katherine M
A pilot study was conducted to assess the feasibility of establishing a multi-site CANadian Pediatric Weight management Registry (CANPWR) containing individual, family and weight management program information. Standardized baseline data were collected to characterize CANPWR participants (n = 310) in comparison to a sample of age-matched Canadian children measured in the nationally representative Canadian Health Measures Survey (CHMS; n = 3,788). This study compared demographic, anthropometric, cardiometabolic and lifestyle characteristics of participants (aged 6-17 years) in the CANPWR pilot study with those from the CHMS. Compared to CHMS respondents, CANPWR participants had higher BMI z-score, waist circumference, blood pressure, total cholesterol, LDL cholesterol, triglycerides and fasting glucose, and lower HDL cholesterol. They reported lower sugared drink consumption, were more likely to be non-white and had parents with lower education. The CANPWR cohort represents a group that has biological and behavioral profiles that place them at increased health risk and who differ significantly from typical Canadians of the same age.
Kalyoncu, Umut; Bayindir, Özün; Ferhat Öksüz, Mustafa; Doğru, Atalay; Kimyon, Gezmiş; Tarhan, Emine Figen; Erden, Abdulsamet; Yavuz, Şule; Can, Meryem; Çetin, Gözde Yıldırım; Kılıç, Levent; Küçükşahin, Orhan; Omma, Ahmet; Ozisler, Cem; Solmaz, Dilek; Bozkirli, Emine Duygu Ersözlü; Akyol, Lütfi; Pehlevan, Seval Masatlıoğlu; Gunal, Esen Kasapoglu; Arslan, Fatos; Yılmazer, Barış; Atakan, Nilgun; Aydın, Sibel Zehra
The aim was to assess the characteristics of PsA, find out how well the disease is controlled in real life, demonstrate the treatments and identify the unmet needs. The PsA registry of Turkey is a multicentre Web-based registry established in 2014 and including 32 rheumatology centres. Detailed data regarding demographics for skin and joint disease, disease activity assessments and treatment choices were collected. One thousand and eighty-one patients (64.7% women) with a mean (sd) PsA duration of 5.8 (6.7) years were enrolled. The most frequent type of PsA was polyarticular [437 (40.5%)], followed by oligoarticular [407 (37.7%)] and axial disease [372 (34.4%)]. The mean (sd) swollen and tender joint counts were 1.7 (3) and 3.6 (4.8), respectively. Of these patients, 38.6% were on conventional synthetic DMARD monotherapy, 7.1% were on anti-TNF monotherapy, and 22.5% were using anti-TNF plus conventional synthetic DMARD combinations. According to DAS28, 86 (12.4%) patients had high and 105 (15.2%) had moderate disease activity. Low disease activity was achieved in 317 (45.7%) patients, and 185 (26.7%) were in remission. Minimal disease activity data could be calculated in 247 patients, 105 of whom (42.5%) had minimal disease activity. The major differences among sexes were that women were older and had less frequent axial disease, more fatigue, higher HAQ scores and less remission. The PsA registry of Turkey had similarities with previously published registries, supporting its external validity. The finding that women had more fatigue and worse functioning as well as the high percentage of active disease state highlight the unmet need in treatment of PsA. © The Author 2016. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For Permissions, please email: firstname.lastname@example.org.
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of Hazardous Waste...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of Waste Water Treatment...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of hazardous waste...
U.S. Environmental Protection Agency — This GIS dataset contains data on wastewater treatment plants, based on EPA's Facility Registry Service (FRS), EPA's Integrated Compliance Information System (ICIS)...
U.S. Environmental Protection Agency — This data provides location and attribute information on all facilities in EPA's Facility Registry Service (FRS) for a internet web feature service . The FRS is an...
Luong, Mai X; Smith, Kelly P; Stein, Gary S
The accelerating pace of human embryonic stem cell (hESC) research has created an urgent need for the development of hESC registries, information repositories intended to gather, organize and disseminate hESC information. Although of enormous value to this evolving field, registries face significant challenges to their development. These challenges include addressing the legal and ethical issues surrounding hESC derivation as well as complex intellectual property concerns. In addition to these issues, registries must develop tools to efficiently gather, validate and present many different types of hESC information from a variety of sources. Given the pace and regulatory complexities of this field, it is important that registries develop cooperative mechanisms to avoid duplication and more efficiently support hESC research. (c) 2008 Wiley-Liss, Inc.
U.S. Environmental Protection Agency — This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are available in...
U.S. Environmental Protection Agency — This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are available in...
U.S. Environmental Protection Agency — This downloadable data package consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that are...
Investigators from the Ohio State University, Oregon Health and Science University and Rosalind Franklin School of Medicine examined the presenting manifestations, demographics and treatment strategies in children enrolled in the Intracranial Hypertension Registry (IHR).
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of active hazardous...
Sundramoorthy, V.; Tan, C.; Hartel, Pieter H.; den Hartog, Jeremy; Scholten, Johan
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
Sundramoorthy, V.; Tan, C.; Hartel, Pieter H.; den Hartog, Jeremy; Scholten, Johan
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
Department of Homeland Security — This GIS dataset contains data on wastewater treatment plants, based on EPA's Facility Registry Service (FRS) and NPDES, along with Clean Watersheds Needs Survey...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that are...
U.S. Environmental Protection Agency — This dataset contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link to Facility...
U.S. Environmental Protection Agency — This downloadable data package consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are...
Rozenholc, Alexandre; Dodge, Jason; Bréguet, Magali; Sauthier, Philippe
In rare entities such as gestational trophoblastic disease (GTD), only multi-institutional registries can gather significant number of patients to build up valuable clinical databases. No Canada-wide GTD registry currently exists. We conducted a survey among members of the Canadian Society of Gynecologic Oncology (GOC) to investigate their interest in a pan-Canadian GTD registry. We also took the opportunity to explore their management of GTD. An electronic survey was conducted. The target group was the entire GOC Canadian Membership. The survey consisted of 25 questions. The survey participation rate was 39% (67/171). Seventy-six percent of responders treat patients with molar pregnancy or gestational trophoblastic neoplasia (GTN), and the majority treat only 5 or less cases of molar pregnancy and 5 or less cases of GTN per year. In cases of low-risk GTN, 80% of responders use generally recommended single-agent chemotherapy regimens. In cases of high-risk GTN, 76% use generally recommended multiagent chemotherapy regimens. Most respondents do not submit either molar pregnancy or GTN patients to any formal registry, although the vast majority (92%) would do so if they had access to a registry, given that most believe that a registry can or probably can help patients with GTD. Responders indicated that the jurisdiction of such a registry should be national (59%), provincial (25%), and regional (11%). Despite some variation, responders were generally knowledgeable about contemporary management issues. Canadian Society of Gynecologic Oncology members acknowledge generally low exposure to GTD patients in Canada and support the creation of a national GTD registry to facilitate optimal patient care, education, and research.
The Dutch perinatal registry required a new architecture due to the large variability of the submitted data from midwives and hospitals. The purpose of this article is to describe the healthcare information architecture for the Dutch perinatal registry. requirements analysis, design, development and testing. The architecture is depicted for its components and preliminary test results. The data entry and storage work well, the Data Marts are under preparation.
Martins, Ana Maria; Kerstenezky, Marcelo; Linares, Adriana; Politei, Juan; Kohan, Regina; Ospina, Sandra; Varas, Carmen; Villalobos, Jacobo; Amartino, Hernán; Franco, Sergio; Valadez, Guilhermo; Giugliani, Roberto; Guerra, Patricio; Sanches, Luz
There are many registries in Latin America as dialysis and kidney transplantation, breast cancer, primary immunodeficiency, acute coronary syndromes, but the focus here are the registries of lysosomal storage diseases (LSD) because is our experience. Registry of Gaucher disease, Fabry disease, Pompe disease, and mucopolysaccharidosis type I are comprehensive observational voluntary programs that aim to collect clinical and laboratory data of initiation, progression, and evolution of those diseases, with and without treatment, using questionnaires of quality of life and/or skills and functions. There are two more programs of LSD: Hunter outcome survey and Fabry outcome survey. The registries are a kind of phase IV clinical trials, postmarketing studies delineate additional information including the drug's risks, benefits, and optimal use, and in addition we have data from natural history. The demographics of the Gaucher, Fabry, MPS I, and Pompe Registries show that a total of patients, being 16%, 8%, 15%, and 7%, respectively, of this population, and 19%, 19%, 18%, and 13%, respectively, of all physicians participating in the program are from Latin America. In the Gaucher Registry, we can observe that the percentage of children in Latin America (29%) is bigger than the rest of the world (20%), what can mean more severe disease in this population. These diseases are rare, and a database of clinical data from a larger number of patients gives us the opportunity to know about the natural history of these diseases, their phenotypic variability, and the response to specific enzyme replacement therapy in our population.
Burt, S Alexandra; Klump, Kelly L
The primary aim of the Michigan State University Twin Registry (MSUTR) is on understanding developmental changes in genetic, environmental, and neurobiological influences on internalizing and externalizing disorders, with antisocial behavior and disordered eating representing our particular areas of interest. The MSUTR has two broad components: a large-scale, population-based registry of child, adolescent, and adult twins and their families (current N ~20,000) and a series of more focused and in-depth studies drawn from the registry (current N ~4,000). Participants in the population-based registry complete a family health and demographic questionnaire via mail. Families are then recruited for one or more of the intensive, in-person studies from the population-based registry based on their answers to relevant items in the registry questionnaire. These in-person assessments target a variety of biological, genetic, and environmental phenotypes, including multi-informant measures of psychiatric and behavioral phenotypes, census and neighborhood informant reports of twin neighborhood characteristics, buccal swab and salivary DNA samples, assays of adolescent and adult steroid hormone levels, and/or videotaped interactions of child twin families. This article provides an overview of the MSUTR and describes current and future research directions.
Moghaddasi, Hamid; Asadi, Farkhondeh; Rabiei, Reza; Rahimi, Farough; Shahbodaghi, Reihaneh
As cancer is increasingly growing, cancer registry is of great importance as the main core of cancer control programs, and many different software has been designed for this purpose. Therefore, establishing a comprehensive evaluation model is essential to evaluate and compare a wide range of such software. In this study, the criteria of the cancer registry software have been determined by studying the documents and two functional software of this field. The evaluation tool was a checklist and in order to validate the model, this checklist was presented to experts in the form of a questionnaire. To analyze the results of validation, an agreed coefficient of %75 was determined in order to apply changes. Finally, when the model was approved, the final version of the evaluation model for the cancer registry software was presented. The evaluation model of this study contains tool and method of evaluation. The evaluation tool is a checklist including the general and specific criteria of the cancer registry software along with their sub-criteria. The evaluation method of this study was chosen as a criteria-based evaluation method based on the findings. The model of this study encompasses various dimensions of cancer registry software and a proper method for evaluating it. The strong point of this evaluation model is the separation between general criteria and the specific ones, while trying to fulfill the comprehensiveness of the criteria. Since this model has been validated, it can be used as a standard to evaluate the cancer registry software.
Full Text Available Steinbjørn Hansen Department of Oncology, Odense University Hospital and Institute of Clinical Research, Faculty of Health Sciences, University of Southern Denmark, Odense, Denmark Aim of database: The Danish Neuro-Oncology Registry (DNOR was established by the Danish Neuro-Oncology Group as a national clinical database. It was established for the purpose of supporting research and development in adult patients with primary brain tumors in Denmark. Study population: DNOR has registered clinical data on diagnostics and treatment of all adult patients diagnosed with glioma since January 1, 2009, which numbers approximately 400 patients each year. Main variables: The database contains information about symptoms, presurgical magnetic resonance imaging (MRI characteristics, performance status, surgical procedures, residual tumor on postsurgical MRI, postsurgical complications, diagnostic and histology codes, radiotherapy, and chemotherapy. Descriptive data: DNOR publishes annual reports on descriptive data. During the period of registration, postoperative MRI is performed in a higher proportion of the patients (Indicator II, and a higher proportion of patients have no residual tumor after surgical resection of the primary tumor (Indicator IV. Further data are available in the annual reports. The indicators reflect only minor elements of handling brain tumor patients. Another advantage of reporting indicators is the related multidisciplinary discussions giving a better understanding of what actually is going on, thereby facilitating the work on adjusting the national guidelines in the Danish Neuro-Oncology Group. Conclusion: The establishment of DNOR has optimized the quality in handling primary brain tumor patients in Denmark by reporting indicators and facilitating a better multidisciplinary collaboration at a national level. DNOR provides a valuable resource for research. Keywords: brain neoplasms, brain cancer, glioma, clinical quality indicators
Di Napoli, Anteo; Lapucci, Enrica; Baglio, Giovanni; Di Giulio, Salvatore
An increasing number of foreigners was observed in Italy even among chronic dialysis patients. We compared demographic, clinical, treatment characteristics and survival probability between groups of Italian and foreign patients with chronic dialysis in Lazio. We analysed data from the Lazio Dialysis and Transplantation Registry from 2004 to 2012 (4,076 prevalent chronic dialysis patients in 31-12-2012). Among 7,970 incident patients, we evaluated, by country of birth, survival probability by using Kaplan-Meier method and mortality risk, through multiple Cox regression. We observed an increase of foreigners among chronic dialysis patients in Lazio from 2004 (4.4%) up to 2012 (7.6%, test for trend: pforeign patients were younger (53.816.3 vs. 68.713.6) and more frequently: women (42.7% vs. 37.7%), HbsAg-positive (18.1% vs. 13.9%), not vaccinated if HBV susceptible (26.8% vs. 20.9%), late referral (21.6% vs. 12.9%) and suitable for kidney transplantation (21.7% vs. 9.9%). Foreigners compared with Italians had higher survival probability at 1 year (91.9% vs. 84.7%) and 5 years (74,6% vs. 51,5%) after chronic dialysis has been started. We observed a lower mortality risk (HR=0.71;IC95%:0.58-0.87) among foreign patients even after adjustment for many potential confounding factors. Our findings suggest that health status and treatment of end stage renal disease, including access to kidney transplantation, were similar between groups of Italian and foreign patients in Lazio. Observed differences in patients' characteristics were probably attributable to younger age of foreigners. However, further analyses are needed to fully explain higher survival probability in chronic dialysis among foreigners compared with Italians.
the basal ganglia (333.0); Dementia with Lewy bodies (DLB) (331.82) Summary & Future Work: • Active ascertainment of PD is feasible when reporting is...4 Body ………………………………………………………………………………. 4 Key Accomplishments …………………………….…………………………….. 5 Reportable Outcomes...obtained from Medicare (CMS) for the same counties for the year 2007. Prevalence estimates based on CMS data were determined. B. Body The goals of
The work which is presented in this report is part of a Norwegian epidemiological project, carried out in cooperation between Institutt for Energiteknikk (IFE), the Norwegian Cancer Registry (NCR) and the Norwegian Radiation Protection Authority (NRPA). The project has been partially financed by the Norwegian Research Council. Originating from the Norwegian project, a number of similar projects have been started or are in the planning stage in a number of European countries. The present report lays the ground for estimation of individual exposure histories to cosmic radiation of pilots flying a great diversity of different aircrafts. Aircrafts that appear in the time-tables of the Scandinavian Airline System (SAS) have been treated in an earlier report. The results presented in this report (radiation doserates for the different types of aircrafts in the different years) will, in a later stage of the project be utilized to estimate the individual radiation exposure histories. The major sources of information used as basis for the work in this report is information provided by several active pilots, members of the Pilots Associations, along with calculations performed using US Federal Aviation Administration`s computer code CARI-3N. 2 refs.
Federal Laboratory Consortium — The Pilot Plant for Explosive Formulation supports the development of new explosives that are comprised of several components. This system is particularly beneficial...
Bachelder, Edward; Hess, Ronald; Godfroy-Cooper, Martine; Aponso, Bimal
In this study, behavioral models are developed that closely reproduced pulsive control response of two pilots from the experimental pool using markedly different control techniques (styles) while conducting a tracking task. An intriguing find was that the pilots appeared to: 1) produce a continuous, internally-generated stick signal that they integrated in time; 2) integrate the actual stick position; and 3) compare the two integrations to issue and cease pulse commands. This suggests that the pilots utilized kinesthetic feedback in order to perceive and integrate stick position, supporting the hypothesis that pilots can access and employ the proprioceptive inner feedback loop proposed by Hess' pilot Structural Model. The Pulse Models used in conjunction with the pilot Structural Model closely recreated the pilot data both in the frequency and time domains during closed-loop simulation. This indicates that for the range of tasks and control styles encountered, the models captured the fundamental mechanisms governing pulsive and control processes. The pilot Pulse Models give important insight for the amount of remnant (stick output uncorrelated with the forcing function) that arises from nonlinear pilot technique, and for the remaining remnant arising from different sources unrelated to tracking control (i.e. neuromuscular tremor, reallocation of cognitive resources, etc.).
Pippias, Maria; Kramer, Anneke; Noordzij, Marlies; Afentakis, Nikolaos; Alonso de la Torre, Ram?n; Amb?hl, Patrice M.; Aparicio Madre, Manuel I.; Arribas Monz?n, Felipe; ?sberg, Anders; Bonthuis, Marjolein; Bouzas Caama?o, Encarnaci?n; Bubic, Ivan; Caskey, Fergus J.; Castro de la Nuez, Pablo; Cernevskis, Harijs
Abstract Background: This article summarizes the European Renal Association ? European Dialysis and Transplant Association Registry?s 2014 annual report. It describes the epidemiology of renal replacement therapy (RRT) for end-stage renal disease (ESRD) in 2014 within 35 countries. Methods: In 2016, the ERA-EDTA Registry received data on patients who in 2014 where undergoing RRT for ESRD, from 51 national or regional renal registries. Thirty-two registries provided individual patient level da...
Wiegand, Timothy J; Wax, Paul M; Schwartz, Tayler; Finkelstein, Yaron; Gorodetsky, Rachel; Brent, Jeffrey
In 2010, the American College of Medical Toxicology established its Case Registry, the Toxicology Investigators Consortium (ToxIC). ToxIC is a prospective registry, which exclusively compiles suspected and confirmed toxic exposure cases cared for at the bedside by medical toxicologists at its participating sites. The Registry aims to fulfill two important gaps in the field: a real-time toxicosurveillance system to identify current poisoning trends and a powerful research tool in toxicology. ToxIC allows extraction of information from medical records making it the most robust multicenter database on chemical toxicities in existence. All cases seen by medical toxicologists at participating institutions were entered in a database. Information characterizing patients entered in 2011 was tabulated. 2010 data was also included so that cumulative total numbers could be described as well. The current report is a summary of the data collected in 2011 in comparison to 2010 entries and also includes cumulative data through December 31st, 2011. During 2011, 28 sites with 49 specific institutions contributed a total of 6,456 cases to the Registry. The total number of cases entered into the registry at the end of 2011 was 10,392. Emergency departments remained the most common source of consultations in 2011, accounting for 53 % of cases. The most common reason for consultation was for pharmaceutical overdoses, which occurred in 48 % of patients, including intentional (37 %) and unintentional (11 %) exposures. The most common classes of agents were sedative-hypnotics (1,492 entries in 23 % of cases), non-opioid analgesics (1,368 cases in 21 % of cases), opioids (17 %), antidepressants (16 %), stimulants/sympathomimetics (12 %), and ethanol (8 %). N-acetylcysteine was the most commonly administered antidote during 2011, similar to 2010, followed by the opioid antagonist naloxone, sodium bicarbonate, physostigmine and flumazenil. Anti-crotalid Fab fragments (CroFab) were
Rhyee, Sean H; Farrugia, Lynn; Campleman, Sharan L; Wax, Paul M; Brent, Jeffrey
The Toxicology Investigators Consortium (ToxIC) Case Registry was established in 2010 by the American College of Medical Toxicology. The Registry includes all medical toxicology consultations performed at participating sites. The Registry was queried for all cases entered between January 1 and December 31, 2014. Specific data reviewed for analysis included demographics (age, gender, ethnicity), source of consultation, reasons for consultation, agents involved in toxicological exposures, signs, symptoms, clinical findings, fatalities, and treatment. In 2014, 9172 cases were entered in the Registry across 47 active member sites. Females accounted for 51.1 % of cases. The majority (65.1 %) of cases were adults between the ages of 19 and 65. Caucasians made up the largest identified ethnic group (48.9 %). Most Registry cases originated from the inpatient setting (93.5 %), with a large majority of these consultations coming from the emergency department or inpatient admission services. Intentional and unintentional pharmaceutical exposures continued to be the most frequent reasons for consultation, accounting for 61.7 % of cases. Among cases of intentional pharmaceutical exposure, 62.4 % were associated with a self-harm attempt. Non-pharmaceutical exposures accounted for 14.1 % of Registry cases. Similar to the past years, non-opioid analgesics, sedative-hypnotics, and opioids were the most commonly encountered agents. Clinical signs or symptoms were noted in 81.9 % of cases. There were 89 recorded fatalities (0.97 %). Medical treatment (e.g., antidotes, antivenom, chelators, supportive care) was rendered in 62.3 % of cases. Patient demographics and exposure characteristics in 2014 Registry cases remain similar to prior years. The majority of consultations arose in the acute care setting (emergency department or inpatient) and involved exposures to pharmaceutical products. Among exposures, non-opioid analgesics, sedative/hypnotics, and opioids were the most frequently
Ingles, Jodie; McGaughran, Julie; Vohra, Jitendra; Weintraub, Robert G; Davis, Andrew; Atherton, John; Semsarian, Christopher
A National Genetic Heart Disease Registry has recently been established, with the aim to enroll every family in Australia with a genetically determined cardiomyopathy or primary arrhythmic disorder. The Registry seeks to further our understanding of the impact and burden of disease in this population; increase awareness and provide education to health professionals and families; and establish a large cardiac genetic cohort as a resource for approved research studies. The Registry is currently recruiting families with inherited cardiomyopathies (e.g. hypertrophic cardiomyopathy) and primary arrhythmogenic disorders (e.g. long QT syndrome), with scope to expand this in the future. Affected individuals, as well as their first-degree (at-risk) family members are eligible to enroll. Participants are currently being recruited from cardiac genetics clinics in approved recruitment sites and hope to expand to other Australian centres including general cardiology practice in the future. A significant focus of the Registry is to improve understanding and create awareness of inherited heart diseases, which includes ensuring families are aware of genetic testing options and current clinical screening recommendations for at-risk family members. A Registry Advisory Committee has been established under the NHMRC Guidelines, and includes a representative from each major recruitment centre. This committee approves all decisions relating to the Registry including approval of research studies. A National Genetic Heart Disease Registry will provide a valuable resource to further our knowledge of the clinical and genetic aspects of these diseases. Since most of the current data about the prevalence, natural history and outcomes of genetic heart diseases has emanated from the United States and Europe, characterising these Australian populations will be of significant benefit, allowing for more informed and specific health care planning and resource provision.
Mikkelsen, Ellen M; Maindal, Helle Terkildsen
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.
Bergman, Jorieke E H; Loane, Maria; Vrijheid, Martine; Pierini, Anna; Nijman, Rien J M; Addor, Marie-Claude; Barisic, Ingeborg; Béres, Judit; Braz, Paula; Budd, Judith; Delaney, Virginia; Gatt, Miriam; Khoshnood, Babak; Klungsøyr, Kari; Martos, Carmen; Mullaney, Carmel; Nelen, Vera; Neville, Amanda J; O'Mahony, Mary; Queisser-Luft, Annette; Randrianaivo, Hanitra; Rissmann, Anke; Rounding, Catherine; Tucker, David; Wellesley, Diana; Zymak-Zakutnia, Natalya; Bakker, Marian K; de Walle, Hermien E K
Hypospadias is a common congenital malformation. The prevalence of hypospadias has a large geographical variation, and recent studies have reported both increasing and decreasing temporal trends. It is unclear whether hypospadias prevalence is associated with maternal age. To analyze the prevalence and trends of total hypospadias, isolated hypospadias, hypospadias with multiple congenital anomalies, hypospadias with a known cause, and hypospadias severity subtypes in Europe over a 10-year period and to investigate whether maternal age is associated with hypospadias. We included all children with hypospadias born from 2001 to 2010 who were registered in 23 EUROCAT registries. Information on the total number of births and maternal age distribution for the registry population was also provided. We analyzed the total prevalence of hypospadias and relative risks by maternal age. From 2001 to 2010, 10,929 hypospadias cases were registered in 5,871,855 births, yielding a total prevalence of 18.61 per 10,000 births. Prevalence varied considerably between different registries, probably due to differences in ascertainment of hypospadias cases. No significant temporal trends were observed with the exceptions of an increasing trend for anterior and posterior hypospadias and a decreasing trend for unspecified hypospadias. After adjusting for registry effects, maternal age was not significantly associated with hypospadias. Total hypospadias prevalence was stable in 23 EUROCAT registries from 2001 to 2010 and was not significantly influenced by maternal age.
Pang, Xiaoqing; Kozlowski, Natascha; Wu, Sulong; Jiang, Mei; Huang, Yongbo; Mao, Pu; Liu, Xiaoqing; He, Weiqun; Huang, Chaoyi; Li, Yimin; Zhang, Haibo
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.
Borcek, Alp Ozgun; Bulduk, Erkut B; Civi, Soner; Emmez, Hakan; Kaymaz, Memduh
Successfully established registry systems, rather than personal efforts to collect data, are required to record, analyze, compare and secure patient related data. Unfortunately, our country does not have such patient registry systems for spinal pathologies and surgeries at this time. In order to fill this gap in patient management in Turkey, the authors adopted already established Spine Tango registry system in a unique way answering the requirements of our health system. This article aims to present the adaptation process of Spine Tango forms for use in Turkish and describe the first implementation with 50 patients treated for spinal pathologies in a tertiary referral center. In 2011, an effort was initiated by the first author to translate the original Spine Tango forms into Turkish. Funding for this project was provided by authors themselves. With the assistance of a Spine Tango team, the translation process was completed. The Turkish forms were then used in an academic institution with a high spinal workload. A local solution was developed by the authors using commercially available software and mobile instruments. This system was tested with 50 spine patients from June 2012 to January 2013. The analysis of the data gathered using the new Turkey Spine Tango registry system was successful. In an environment of exponentially increasing medical data, successfully established registry systems have the potential to facilitate patient management. The authors recommend the use of Turkish Spine Tango forms for clinics performing spinal interventions.
Shimakawa, Yusuke; Bah, Ebrima; Wild, Christopher P; Hall, Andrew J
The Gambia National Cancer Registry (GNCR) is one of the few nationwide population-based cancer registries in sub-Saharan Africa. Most registries in sub-Saharan Africa are limited to cities; therefore, the GNCR is important in providing estimates of cancer incidence in rural Africa. Our study assesses the quality of its data. The methods proposed by Bray and Parkin, and Parkin and Bray (Eur J Cancer 2009;45:747-64) were applied to the registry data from 1990 to 2009 to assess comparability, validity and completeness. The system used for classification and coding of neoplasms followed international standards. The percentage of cases morphologically verified was 18.1% for men and 33.1% for women, and that of death certificate only cases was 6.6 and 3.6%, respectively. Incidence rates in rural regions were lower than in the urban part of the country, except amongst young male adults. Comparison with other West African registries showed that the incidences of liver and uterine cervical cancer were comparable, but those of prostate and breast in The Gambia were relatively low. The overall completeness was estimated at 50.3% using the capture-recapture method. The GNCR applies international standard practices to data collection and handling, providing valuable data on cancer incidence in sub-Saharan Africa. However, the data are incomplete in the rural and elderly populations probably because of health care access and use. Copyright © 2012 UICC.
This review aims to provide guidance on emerging concepts and policy related to European reference networks (ERNs) for rare diseases (RDs) and the development and management of RD patient registries. A major problem facing many RDs including rare renal disorders is that patients do not have a specialist centre that they can attend where clinicians, working as a multidisciplinary team, are experts in the particular disease. Furthermore, for most RDs, no single centre, and in many cases no single country, has sufficient numbers of patients and resources to fully understand the natural history or to conduct clinical and translational research. Therefore, the pooling of manpower and resources through the establishment of ERN and RD patient registries is a common and necessary area of collaboration. The concept of European networks for RDs dates back to the early 2000s and the Commission launch of a call for European pilot reference networks for RDs. These networks of expert centres have been brought together through the desire for further knowledge and innovation in RD areas. Networks demand a holistic approach and long-term vision with close collaboration between clinicians, diagnostic laboratories, scientists, patients and their families. The development of legal measures for ERNs is in progress at the Commission and these networks will be a shared responsibility of the Commission and member states. In the context of ERNs, an essential activity is the patient registries. Patient registries are organized databases where patient information, including demographic, medical and family history, are collected, stored and available for retrieval via standardized and secure methods. Patient registries are increasingly recognized as crucial tools for RD research for which international collaboration is absolutely essential to understand the pathogenesis of rare genotypes, achieve a unified collection of phenotypic data, foster natural history studies providing the foundation
Chico-Fernández, M; Llompart-Pou, J A; Sánchez-Casado, M; Alberdi-Odriozola, F; Guerrero-López, F; Mayor-García, M D; Egea-Guerrero, J J; Fernández-Ortega, J F; Bueno-González, A; González-Robledo, J; Servià-Goixart, L; Roldán-Ramírez, J; Ballesteros-Sanz, M Á; Tejerina-Alvarez, E; Pino-Sánchez, F I; Homar-Ramírez, J
To validate Trauma and Injury Severity Score (TRISS) methodology as an auditing tool in the Spanish ICU Trauma Registry (RETRAUCI). A prospective, multicenter registry evaluation was carried out. Thirteen Spanish Intensive Care Units (ICUs). Individuals with traumatic disease and available data admitted to the participating ICUs. Predicted mortality using TRISS methodology was compared with that observed in the pilot phase of the RETRAUCI from November 2012 to January 2015. Discrimination was evaluated using receiver operating characteristic (ROC) curves and the corresponding areas under the curves (AUCs) (95% CI), with calibration using the Hosmer-Lemeshow (HL) goodness-of-fit test. A value of p<0.05 was considered significant. Predicted and observed mortality. A total of 1405 patients were analyzed. The observed mortality rate was 18% (253 patients), while the predicted mortality rate was 16.9%. The area under the ROC curve was 0.889 (95% CI: 0.867-0.911). Patients with blunt trauma (n=1305) had an area under the ROC curve of 0.887 (95% CI: 0.864-0.910), and those with penetrating trauma (n=100) presented an area under the curve of 0.919 (95% CI: 0.859-0.979). In the global sample, the HL test yielded a value of 25.38 (p=0.001): 27.35 (p<0.0001) in blunt trauma and 5.91 (p=0.658) in penetrating trauma. TRISS methodology underestimated mortality in patients with low predicted mortality and overestimated mortality in patients with high predicted mortality. TRISS methodology in the evaluation of severe trauma in Spanish ICUs showed good discrimination, with inadequate calibration - particularly in blunt trauma. Copyright © 2015 Elsevier España, S.L.U. y SEMICYUC. All rights reserved.
Doran M. Christensen, DO, REAC/TS Associate Director and Staff Physician Becky Murdock, REAC/TS Registry and Health Physics Technician
Over the past four years, REAC/TS has presented a number of case reports from its Radiation Accident Registry. Victims of radiological or nuclear incidents must meet certain dose criteria for an incident to be categorized as an “accident” and be included in the registry. Although the greatest numbers of “accidents” in the United States that have been entered into the registry involve radiation devices, the greater percentage of serious accidents have involved sealed sources of one kind or another. But if one looks at the kinds of accident scenarios that have resulted in extreme consequence, i.e., death, the greater share of deaths has occurred in medical settings.
Full Text Available Respiratory syncytial virus (RSV infection occurs commonly in infants aged ≤2 years, and severe infection results in hospitalization with accompanying morbidity and mortality. Palivizumab has been available for prophylaxis for the past 15 years. Prospective data on patients who received palivizumab from 2005 to 2012 has been assembled in the Canadian registry (CARESS to document utilization, compliance, and health outcomes in both hospital and community settings. Long-term data is necessary to evaluate the impact of palivizumab on the incidence of RSV infections, minimize healthcare resources, and identify which infant subpopulations are receiving prophylaxis. A database search was also conducted for similar information from published registries, and hospitalization rates were compared to results from randomized clinical trials (RCTs.Overall hospitalization rates (percent; range for respiratory-related illnesses and RSV-specific infection in infants who meet standard indications for prophylaxis were 6.6 (3.3–7.7 and 1.55 (0.3–2.06, respectively, in CARESS, which closely aligns with registry data from 4 other countries, despite the former comprising the largest cohort of complex patients internationally. Overall RSV-related hospitalization rates were lower across registries compared to equivalent patients in RCTs. Registry data provides valuable information regarding real-world experience with palivizumab, while facilitating the genesis of new research themes.
Evans, Sue M; Nag, Nupur; Roder, David; Brooks, Andrew; Millar, Jeremy L; Moretti, Kim L; Pryor, David; Skala, Marketa; McNeil, John J
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.
Feltelius, Nils; Gedeborg, Rolf; Holm, Lennart; Zethelius, Björn
The aim of this study was to describe content and procedures in some selected Swedish health care quality registries (QRs) of relevance to regulatory decision-making. A workshop was organized with participation of seven Swedish QRs which subsequently answered a questionnaire regarding registry content on drug treatments and outcomes. Patient populations, coverage, data handling and quality control, as well as legal and ethical aspects are presented. Scientific publications from the QRs are used as a complementary measure of quality and scientific relevance. The registries under study collect clinical data of high relevance to regulatory and health technology agencies. Five out of seven registries provide information on the drug of interest. When applying external quality criteria, we found a high degree of fulfillment, although information on medication was not sufficient to answer all questions of regulatory interest. A notable strength is the option for linkage to the Prescribed Drug Registry and to information on education and socioeconomic status. Data on drugs used during hospitalization were also collected to some extent. Outcome measures collected resemble those used in relevant clinical trials. All registries collected patient-reported outcome measures. The number of publications from the registries was substantial, with studies of appropriate design, including randomized registry trials. Quality registries may provide a valuable source of post-marketing data on drug effectiveness, safety, and cost-effectiveness. Closer collaboration between registries and regulators to improve quality and usefulness of registry data could benefit both regulatory utility and value for health care providers.
Full Text Available Reimar W Thomsen, Henrik Toft Sørensen Department of Clinical Epidemiology, Aarhus University Hospital, DenmarkValidation studies of health care registries are considered boring by some. An epidemiologist recently conducted a validation study based on the Danish National Registry of Patients and received the following unflattering comment from a reviewer: “A good example of a paper of limited scope that probably would only be published electronically where space is unlimited”. We do not subscribe to this point of view. See Original Research article
Rolfson, Ola; Bohm, Eric; Franklin, Patricia
The International Society of Arthroplasty Registries (ISAR) Patient-Reported Outcome Measures (PROMs) Working Group have evaluated and recommended best practices in the selection, administration, and interpretation of PROMs for hip and knee arthroplasty registries. The 2 generic PROMs in common use...... question ("During the past 4 weeks, how would you describe the pain you usually have in your [right/left] [hip/knee]?"; response: none, very mild, mild, moderate, or severe) and a single-item satisfaction outcome ("How satisfied are you with your [right/left] [hip/knee] replacement?"; response: very...
Rapsevicius, V.; CMS DQM Group
The Run Registry of the CMS experiment at the LHC is the central tool for the tracking of the data quality monitoring and data certification workflows and the bookkeeping of the results. It consists of a Java web application frontend which connects to an Oracle database in the backend. The current production version 2 of the Run Registry application, was deployed in the beginning of the year 2010, before the LHC data taking started, and has since then undergone a number of full release cycles. In this note we describe the architecture and the experiences from the first year of datataking.
The Run Registry of the CMS experiment at the LHC is the central tool for the tracking of the data quality monitoring and data certification workflows and the bookkeeping of the results. It consists of a Java web application frontend which connects to an Oracle database in the backend. The current production version 2 of the Run Registry application, was deployed in the beginning of the year 2010, before the LHC data taking started, and has since then undergone a number of full release cycles. In this note we describe the architecture and the experiences from the first year of datataking.
Full Text Available Dementia is one of the most disabling health conditions for older people. Increasing attention is paid to the preclinical phase such as cognitive frailty and mild cognitive impairment, and to the prevention programs designed to reduce the number of patients in the future. The aims of this brief report are therefore: i to illustrate an action plan currently active in Treviso and that is aimed at secondary prevention in cognitive frailty subjects on the Treviso Dementia (TREDEM Registry; ii to highlight the results achieved by the TREDEM Registry up to now and how these can be used in future research.
Januszewicz, Wladyslaw; Kaminski, Michal F; Wieszczy, Paulina; Wronska, Ewa; Bielasik, Andrzej; Wojciechowska, Urszula; Didkowska, Joanna; Orlowska, Janina; Regula, Jaroslaw
Barrett's Oesophagus (BO) is a complication of chronic gastro-oesophageal reflux disease (GORD) and is a major risk factor for oesophageal adenocarcinoma. Current guidelines are based on data showing a 0.5% annual malignancy progression rate. The Polish Barrett's Oesophagus Registry (POBOR) was established to characterize Polish patients with BO and estimate the risk of malignant progression. POBOR was established in 1999 after a dedicated training of endoscopists and histopathologists. Physicians registered patients using a dedicated registry form. After excluding patients known to have endoscopic treatment for BO, follow-up Diseases of the Esophagus.
Nagel, G; Zoller, D; Wiedmann, T; Bussas, U; El Idrissi-Lamghari, C; Kneisel, J; Batzler, W U; Becker, N
The European Prospective Investigation into Cancer and Nutrition (EPIC) is a prospective multicentre study that has been implemented to further the understanding of the association between diet and chronic diseases with emphasis on cancer. In Heidelberg from June 1994 until October 1998 about 25,500 subjects aged 35 to 65 years in women and 40 to 65 years in men were recruited. Apart from extensive questions about food intake, the participants were also asked to provide detailed information about their smoking habits, physical activity, subjective well-being, medical history and use of medications. As well as completing the questionnaire and a personal interview, the participants also gave blood samples and anthropometiric measures and the blood pressure were taken in standardized manner. The analyses of the EPIC study will depend on achieving a comprehensive record of all new cancer cases, and all deaths, together with the corresponding cause of death, within the study population. To date all self-reported incident cancer cases are verified by comparing them with pathology reports and hospital records. They are then coded according to the coding list for the International Classification of Diseases (ICD-O2) issued by the World Health Organisation (WHO). Since at begin of the investigation in the study region no cancer registration existed, the participants are followed -up by interval questioning ('active follow-up'). In order to integrate increasingly the data of the Cancer registry Baden-Württemberg (EKR-BW) attempts were made to explore record linkage systems. For this purpose, in the years 2000, 2002, 2003 record linkages between EPIC-Heidelberg and EKR-BW were performed. Procedures were evaluated for performing an anonymous linkage of the EPIC data with the data of the EKR-BW. After a pilot project on the feasibility of the linkage the program was evaluated on the EPIC data, record linkages are performed regularly. Different coding systems were applied
Kourime, M; Bryce, J; Jiang, J; Nixon, R; Rodie, M; Ahmed, S F
With the proliferation of rare disease registries, there is a need for registries to undergo an assessment of their quality against agreed standards to ensure their long-term sustainability and acceptability.This study was performed to evaluate the I-DSD and I-CAH Registries and identify their strengths and weaknesses. The design and operational aspects of the registries were evaluated against published quality indicators. Additional criteria included the level of activity, international acceptability of the registries and their use for research. The design of the I-DSD and I-CAH Registries provides them with the ability to perform multiple studies and meet the standards for data elements, data sources and eligibility criteria. The registries follow the standards for data security, governance, ethical and legal issues, sustainability and communication of activities. The data have a high degree of validity, consistency and accuracy and the completeness is maximal for specific conditions such as androgen insensitivity syndrome and congenital adrenal hyperplasia. In terms of research output, the external validity is strong but the wide variety of cases needs further review. The internal validity of data was condition specific and highest for conditions such as congenital adrenal hyperplasia. The shift of the registry from a European registry to an international registry and the creation of a discrete but linked CAH registry increased the number of users and stakeholders as well as the international acceptability of both registries. The I-DSD and I-CAH registries comply with the standards set by expert organisations. Recent modifications in their operation have allowed the registries to increase their user acceptability.
Ordoñana, Juan R; Rebollo-Mesa, Irene; Carrillo, Eduvigis; Colodro-Conde, Lucía; García-Palomo, Francisco J; González-Javier, Francisca; Sánchez-Romera, Juan F; Aznar Oviedo, José M; de Pancorbo, Marian M; Pérez-Riquelme, Francisco
The Murcia Twin Registry (MTR) was created in 2006, under the auspices of the University of Murcia and the regional Health Authority, aiming to develop a research resource in Spain intended to stimulate current research and new investigation on the analysis of genetic factors related to health and health-related behaviors. The MTR development strategy was designed as a step-by-step process. Initially, it was focused on women's health but nowadays it includes males and opposite-sex twins. The database comprises 2,281 participants born between 1940 and 1966 in the region of Murcia, in Spain. There have been three waves of data collection and today the MTR databases include questionnaire and anthropometric data as well as biological samples. The current main areas of research interest are health and health-related behaviors, including lifestyle, health promotion, and quality of life. Future short-term development points to the completion of the biobank and continuing the collection of longitudinal data.
Montilla, Simona; Xoxi, Entela; Russo, Pierluigi; Cicchetti, Americo; Pani, Luca
The AIFA (Agenzia Italiana del Farmaco--Italian Medicines Agency) Monitoring Registries track the eligibility of patients and the complete flow of treatments, guaranteeing appropriateness in use of pharmaceutical products, according to approved indications. This study describes the Italian pharmaceutical context and the aims and functioning of AIFA Monitoring Registries, focusing on the applications to the Managed Entry Agreements (MEAs) and HTA approaches. The AIFA Monitoring Registries System has been operational in Italy since 2005. In 2012, the system became part of the NHS Information Technology system, aiming at enhancing appropriate use of pharmaceuticals and efficiency of the administrative activity. Currently, seventy-six medicines are monitored through the system, corresponding to fifty-eight therapeutic indications; individual treatments recorded are more than 515,000, for a population of approximately 505,000 patients. For each monitored product, patients eligible for treatment are registered in the specific therapeutic indication dynamic monitoring database to collect epidemiologic and clinical data, including data on the safety profile, and ex-post information missing at first evaluation stage. AIFA Monitoring Registries allow the evaluation of the pharmaceuticals' performance in clinical practice and may promote innovation and quicker access to medicines at affordable prices, for the benefit of patients.
This combined retrospective and prospective study describes trauma patients in an urban African Hospital and assesses whether use of trauma registries leads to improved clinical assesment. The Kampala Trauma Score (KTS) is assessed as an injury severity filter. The level of clinical assessment was defined by Model ...
Jerjes-Sanchez, Carlos; Martinez-Sanchez, Carlos; Borrayo-Sanchez, Gabriela; Carrillo-Calvillo, Jorge; Juarez-Herrera, Ursulo; Quintanilla-Gutierrez, Juan
RENASICA III is a prospective, multicenter registry on acute coronary syndromes (ACS). The main objective will be to identify the outcome in tertiary and community hospitals and perform strategies to improve quality of care in Mexico. RENASICA III will enroll 8000 patients in public health and private hospitals. The registry began in November 2012 with a planned recruitment during 12 months and a 1-year follow-up. The study population will comprise a consecutive, prospective cohort of patients >18 years with ACS final diagnosis and evidence of ischemic heart disease. 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, RENASICA III emerges as a link among randomized clinical trials developed by experts and previous Mexican experience. Copyright © 2014 Instituto Nacional de Cardiología Ignacio Chávez. Published by Masson Doyma México S.A. All rights reserved.
... Workshop AGENCY: Food and Drug Administration, HHS. ACTION: Notice of public workshop. The Food and Drug Administration (FDA) is announcing a public workshop entitled ``International Consortium of Orthopedic Registries (ICOR).'' The ] purpose of the public workshop is to facilitate discussion among FDA and worldwide...
de By, Theo M M H; Mohacsi, Paul; Gummert, Jan
other founding international members. It aims to promote scientific research to improve care of end-stage heart failure patients with ventricular assist device or a total artificial heart as long-term mechanical circulatory support. Likewise, the organization aims to provide and maintain a registry...
Repchevsky, Dmitry; Gelpi, Josep Ll.
Despite of the variety of available Web services registries specially aimed at Life Sciences, their scope is usually restricted to a limited set of well-defined types of services. While dedicated registries are generally tied to a particular format, general-purpose ones are more adherent to standards and usually rely on Web Service Definition Language (WSDL). Although WSDL is quite flexible to support common Web services types, its lack of semantic expressiveness led to various initiatives to describe Web services via ontology languages. Nevertheless, WSDL 2.0 descriptions gained a standard representation based on Web Ontology Language (OWL). BioSWR is a novel Web services registry that provides standard Resource Description Framework (RDF) based Web services descriptions along with the traditional WSDL based ones. The registry provides Web-based interface for Web services registration, querying and annotation, and is also accessible programmatically via Representational State Transfer (REST) API or using a SPARQL Protocol and RDF Query Language. BioSWR server is located at http://inb.bsc.es/BioSWR/and its code is available at https://sourceforge.net/projects/bioswr/under the LGPL license. PMID:25233118
Repchevsky, Dmitry; Gelpi, Josep Ll
Despite of the variety of available Web services registries specially aimed at Life Sciences, their scope is usually restricted to a limited set of well-defined types of services. While dedicated registries are generally tied to a particular format, general-purpose ones are more adherent to standards and usually rely on Web Service Definition Language (WSDL). Although WSDL is quite flexible to support common Web services types, its lack of semantic expressiveness led to various initiatives to describe Web services via ontology languages. Nevertheless, WSDL 2.0 descriptions gained a standard representation based on Web Ontology Language (OWL). BioSWR is a novel Web services registry that provides standard Resource Description Framework (RDF) based Web services descriptions along with the traditional WSDL based ones. The registry provides Web-based interface for Web services registration, querying and annotation, and is also accessible programmatically via Representational State Transfer (REST) API or using a SPARQL Protocol and RDF Query Language. BioSWR server is located at http://inb.bsc.es/BioSWR/and its code is available at https://sourceforge.net/projects/bioswr/under the LGPL license.
Accidental injury at home or on the roads was the most common cause of admission with majority of patients not receiving any pre-hospital care. Sixteen percent of patients died while admitted. Conclusion: The data obtained from this de novo registry largely aligns to previous institutional reports while revealing data points ...
Saharan Africa and assess the need for population-based cancer registries to enhance cancer care .... Conarkry, Bamako, Gambia Kampala, Harare, U.S. .... decades age. This age distribution is similar to that found in other African countries (Mali,. Uganda, Zimbabwe), with the majority of cases occurring in men between ...
Full Text Available Despite of the variety of available Web services registries specially aimed at Life Sciences, their scope is usually restricted to a limited set of well-defined types of services. While dedicated registries are generally tied to a particular format, general-purpose ones are more adherent to standards and usually rely on Web Service Definition Language (WSDL. Although WSDL is quite flexible to support common Web services types, its lack of semantic expressiveness led to various initiatives to describe Web services via ontology languages. Nevertheless, WSDL 2.0 descriptions gained a standard representation based on Web Ontology Language (OWL. BioSWR is a novel Web services registry that provides standard Resource Description Framework (RDF based Web services descriptions along with the traditional WSDL based ones. The registry provides Web-based interface for Web services registration, querying and annotation, and is also accessible programmatically via Representational State Transfer (REST API or using a SPARQL Protocol and RDF Query Language. BioSWR server is located at http://inb.bsc.es/BioSWR/and its code is available at https://sourceforge.net/projects/bioswr/under the LGPL license.
... appropriate Customs officer: (1) Type of aircraft; (2) Nationality and registration number of aircraft; (3... 19 Customs Duties 1 2010-04-01 2010-04-01 false Aircraft of foreign registry. 122.54 Section 122.54 Customs Duties U.S. CUSTOMS AND BORDER PROTECTION, DEPARTMENT OF HOMELAND SECURITY; DEPARTMENT OF...
Petersen, C.; Harder, D.; Abola, Z.; Alberti, D.; Becker, T.; Chardot, C.; Davenport, M.; Deutschmann, A.; Khelif, K.; Kobayashi, H.; Kvist, N.; Leonhardt, J.; Melter, M.; Pakarinen, M.; Pawlowska, J.; Petersons, A.; Pfister, E. -D.; Rygl, M.; Schreiber, R.; Sokol, R.; Ure, B.; Veiga, C.; Verkade, H.; Wildhaber, B.; Yerushalmi, B.; Kelly, D.
Biliary atresia (BA) is a rare but potentially devastating disease. The European Biliary Atresia Registry (EBAR) was set up to improve data collection and to develop a pan-national and interdisciplinary strategy to improve clinical outcomes. From 2001 to 2005, 100 centers from 22 countries
Kehinde O. Raji
Full Text Available The goal of our study was to determine current melanoma reporting methods available to dermatologists and dermatopathologists and quantify changes in reporting methods from 2012 to 2014. A cross-sectional study design was utilized consisting of website perusal of reporting procedures, followed up by telephone and email inquiry of reporting methods from every state cancer registry. This study was conducted over a six-month period from February to August 2014. A previous similar survey was conducted in 2012 over the same time frame and results were compared. Kansas state cancer registry provided no data. As of August 2014, 96% of 49 state cancer registries had electronic methods available to all designated reporters. Seven (14% states required an electronic-only method of reporting melanoma cases. Eighty-six percent allowed hard copy pathology report submission. Compared to the 2012 survey, 2 additional states were found to have initiated electronic reporting methods by 2014. In conclusion, a variety of methods exist for reporting diagnosed melanoma cases. Although most state cancer registries were equipped for electronic transmission of cases for mandated reporters, a number of states were ill-equipped for electronic submission from outpatient dermatologists. There was a general trend towards electronic versus nonelectronic reporting from 2012 to 2014.
... in an increasingly competitive global marketplace. The pilot program allowed 18 small and medium sized enterprises to experiment with new agile business practices in competitive manufacturing environments by forming virtual organizations within...
Eyraud, M Y; Borowsky, M S
In military and civilian aviation, pilot age is a major factor which determines if the individual is allowed to continue flying. Many factors, including legal considerations, escalating personnel and training costs, and higher skill levels necessitated by increasing equipment complexity, have generated considerable interest in the development of "age free" criteria to determine continued suitability for aviation duty. Central to this issue is a demonstration that older pilots are not necessarily unsafe pilots. Naval Safety Center data relating mishap rates and causal factors to pilot age are presented and policy implications discussed. Results indicate that there are significant differences in mishap rates and mishap causal factors as a function of age, but these differences are not those which might be expected based on a knowledge of the aging literature.
This pilot installation was situated near Bld. BA6 opposite to the main entrance of the Meyrin site, with respect to Route de Meyrin. See Weekly Bulletin 3/83, and also photo 8305594X, 8505898X, 8302200.
National Oceanic and Atmospheric Administration, Department of Commerce — Aviation weather reports relayed from pilots to FAA air traffic controllers or National Weather Service personnel. Elements include sky cover, turbulence, wind...
Full Text Available Abstract Background Cancer is a major cause of death in domestic animals. Furthermore, many forms of pet neoplasm resemble that of their human counterparts in biologic behaviour, pathologic expression, and recognised risk factors. In April 2005, a pilot project was activated so as to establish a dog and cat tumour registry living in the Venice and Vicenza provinces (Veneto Region, north-eastern Italy, with the aim of estimating the incidence of spontaneous tumours. Results Through a telephone survey, the estimates of canine and feline populations of the catchment area turned out to be of 296,318 (CI +/- 30,201 and 214,683 (CI +/- 21,755 subjects, respectively. During the first three years, overall 2,509 canine and 494 feline cases of neoplasia were diagnosed. In dogs, the estimated annual incidence rate (IR per 100,000 dogs for all tumours was 282 in all the catchment area, whereas in cats the IR was much lower (IR = 77. Malignant and benign tumours were equally distributed in male and female dogs, whereas cats had a 4.6-fold higher incidence of malignant tumours than benign. In both dogs and cats, purebreds had an almost 2-fold higher incidence of malignant tumours than mixed breeds. Tumour incidence increased with age in both dog and cat populations. Conclusion This study has provided estimates of incidence of spontaneous neoplasm in companion animals. Further attempts will be made to increase the accuracy in the population size assessment and to ascertain the real gap with the official regional canine demographic registry. Veterinary practitioners may also benefit from the tumour registry insofar they may obtain data for specific breeds, age groups or geographical areas.
Nordo, Amy Harris; Eisenstein, Eric L; Hawley, Jeffrey; Vadakkeveedu, Sai; Pressley, Melissa; Pennock, Jennifer; Sanderson, Iain
This pilot study compared eSource-enabled versus traditional manual data transcription (non-eSource methods) for the collection of clinical registry information. The primary study objective was to compare the time spent completing registry forms using eSource versus non-eSource methods The secondary objectives were to compare data quality associated with these two data capture methods and the flexibility of the workflows. This study directly addressed fundamental questions relating to eSource adoption: what time-savings can be realized, and to what extent does eSource improve data quality. The study used time and motion methods to compare eSource versus non-eSource data capture workflows for a single center OB/GYN registry. Direct observation by industrial engineers using specialized computer software captured keystrokes, mouse clicks and video recordings of the study team in their normal work environment completing real-time data collection. The overall average data capture time was reduced with eSource versus non-eSource methods (difference, 151s per case; eSource, 1603s; non-eSource, 1754s; p=0.051). The average data capture time for the demographic data was reduced (difference, 79s per case; eSource, 133s; non-eSource, 213s; p<0.001). This represents a 37% time reduction (95% confidence interval 27% to 47%). eSourced data field transcription errors were also reduced (eSource, 0%; non-eSource, 9%). The use of eSource versus traditional data transcription was associated with a significant reduction in data entry time and data quality errors. Further studies in other settings are needed to validate these results. Copyright © 2017 The Authors. Published by Elsevier B.V. All rights reserved.
Wiegand, Timothy; Wax, Paul; Smith, Eric; Hart, Katherine; Brent, Jeffrey
In 2010, the American College of Medical Toxicology (ACMT) established its Case Registry, the Toxicology Investigators Consortium (ToxIC). All cases are entered prospectively and include only suspected and confirmed toxic exposures cared for at the bedside by board-certified or board-eligible medical toxicologists at its participating sites. The primary aims of establishing this Registry include the development of a realtime toxico-surveillance system in order to identify and describe current or evolving trends in poisoning and to develop a research tool in toxicology. ToxIC allows for extraction of data from medical records from multiple sites across a national and international network. All cases seen by medical toxicologists at participating institutions were entered into the database. Information characterizing patients entered in 2012 was tabulated and data from the previous years including 2010 and 2011 were included so that cumulative numbers and trends could be described as well. The current report includes data through December 31st, 2012. During 2012, 38 sites with 68 specific institutions contributed a total of 7,269 cases to the Registry. The total number of cases entered into the Registry at the end of 2012 was 17,681. Emergency departments remained the most common source of consultation in 2012, accounting for 61 % of cases. The most common reason for consultation was for pharmaceutical overdose, which occurred in 52 % of patients including intentional (41 %) and unintentional (11 %) exposures. The most common classes of agents were sedative-hypnotics (1,422 entries in 13 % of cases) non-opioid analgesics (1,295 entries in 12 % of cases), opioids (1,086 entries in 10 % of cases) and antidepressants (1,039 entries in 10 % of cases). N-acetylcysteine (NAC) was the most common antidote administered in 2012, as it was in previous years, followed by the opioid antagonist naloxone, sodium bicarbonate, physostigmine and flumazenil. Anti-crotalid Fab
... VA that is similar to the Persian Gulf War Veterans Health Registry. Registry examinations is provided to veterans who served in Korea in 1968 or 1969, and/or any U.S. veteran who may have been exposed...
... VA that is similar to the Persian Gulf War Veterans Health Registry. Registry examination is provided to veterans who served in Korea in 1968 or 1969, and/or any U.S. veteran who may have been exposed to...
Sheehan, Jason P; Kavanagh, Brian D; Asher, Anthony; Harbaugh, Robert E
Stereotactic radiosurgery (SRS) represents a multidisciplinary approach to the delivery of ionizing high-dose radiation to treat a wide variety of disorders. Much of the radiosurgical literature is based upon retrospective single-center studies along with a few randomized controlled clinical trials. More timely and effective evidence is needed to enhance the consistency and quality of and clinical outcomes achieved with SRS. The authors summarize the creation and implementation of a national SRS registry. The American Association of Neurological Surgeons (AANS) through NeuroPoint Alliance, Inc., started a successful registry effort with its lumbar spine initiative. Following a similar approach, the AANS and NeuroPoint Alliance collaborated with corporate partners and the American Society for Radiation Oncology to devise a data dictionary for an SRS registry. Through administrative and financial support from professional societies and corporate partners, a framework for implementation of the registry was created. Initial plans were devised for a 3-year effort encompassing 30 high-volume SRS centers across the country. Device-specific web-based data-extraction platforms were built by the corporate partners. Data uploaders were then used to port the data to a common repository managed by Quintiles, a national and international health care trials company. Audits of the data for completeness and veracity will be undertaken by Quintiles to ensure data fidelity. Data governance and analysis are overseen by an SRS board comprising equal numbers of representatives from the AANS and NeuroPoint Alliance. Over time, quality outcome assessments and post hoc research can be performed to advance the field of SRS. Stereotactic radiosurgery offers a high-technology approach to treating complex intracranial disorders. Improvements in the consistency and quality of care delivered to patients who undergo SRS should be afforded by the national registry effort that is underway.
Full Text Available Background: Disease registry is a database that includes information about people suffering a special kind of disease. The aim of this study was to first identify and compare the National Renal Disease Registry (NRDR characteristics in some countries with Iran; and second, develop a provisional and NRDR for Iran. Materials and Methods: Retrieval of data of the NRDR was performed by scholars responsible in related agencies, including the Ministry of Health and Medical Education, Renal Disease charity, and data registries in the United States, United Kingdom, Malaysia, and Iran. This research was applied, and the study was descriptive-comparative. The study population consisted of the NRDR in selected countries in which data were collected by forms that were designed according to the study objectives. Sources of data were researchers, articles, books, journals, databases, websites, related documents, and people who are active in this regard, and related agencies, including the Ministry of Health and Medical Education, and patient support charity. The researchers collected data for each country based on the study objectives and then put them in comparative tables. Data were analyzed by descriptive, comparative, and theoretical methods. Results: Most of the renal transplant teams report their own results as a single center experiences. America and Britain have a preeminent national registry of renal disease compared to other countries. Conclusion: Given that control, prevention, and treatment of chronic renal diseases incur high expenses and the disease is one of leading mortality factors in Iran and across the world and since national registry system for chronic renal diseases can provide better tools and strategies to manage and evaluate patients′ characteristics as well as risk factors which eventually leads to making better decisions.
Noordzij, Marlies; Kramer, Anneke; Abad Diez, Jos? M.; Alonso de la Torre, Ram?n; Arcos Fuster, Emma; Bikbov, Boris T.; Bonthuis, Marjolein; Bouzas Caama?o, Encarnaci?n; ?ala, Svetlana; Caskey, Fergus J.; Castro de la Nuez, Pablo; Cernevskis, Harijs; Collart, Frederic; D?az Tejeiro, Rafael; Djukanovic, Ljubica
Background This article provides a summary of the 2011 ERA?EDTA Registry Annual Report (available at www.era-edta-reg.org). Methods Data on renal replacement therapy (RRT) for end-stage renal disease (ESRD) from national and regional renal registries in 30 countries in Europe and bordering the Mediterranean Sea were used. From 27 registries, individual patient data were received, whereas 17 registries contributed data in aggregated form. We present the incidence and prevalence of RRT, and ren...
Pippias, Maria; Stel, Vianda S.; Abad Diez, José María; Afentakis, Nikolaos; Herrero Calvo, José Antonio; Arias Rodríguez, Manuel; Tomilina, Natalia; Bouzas Caamaño, Encarnación; Buturovic Ponikvar, Jadranka; Čala, Svjetlana; Caskey, Fergus J.; Castro de la Nuez, Pablo; Cernevskis, Harijs; Collart, Frederic; Alonso de la Torre, Ramón
BACKGROUND: This article summarizes the 2012 European Renal Association-European Dialysis and Transplant Association Registry Annual Report (available at www.era-edta-reg.org) with a specific focus on older patients (defined as ≥65 years). METHODS: Data provided by 45 national or regional renal registries in 30 countries in Europe and bordering the Mediterranean Sea were used. Individual patient level data were received from 31 renal registries, whereas 14 renal registries contr...
Jensen, M S; Snerum, T M Ø; Olsen, L H
In recent years several Danish studies of the etiology, time trends and long-term health consequences of cryptorchidism have relied on diagnoses and surgical treatments registered in the National Patient Registry. We evaluated the diagnostic accuracy of these registry data.......In recent years several Danish studies of the etiology, time trends and long-term health consequences of cryptorchidism have relied on diagnoses and surgical treatments registered in the National Patient Registry. We evaluated the diagnostic accuracy of these registry data....
Full Text Available I would like to thank LIBER and EBLIDA for inviting me to present this paper on the role of registries in the digitization workflow. During the past 18 months, OCLC has been working on a project to synchronize WorldCat with mass digitization projects, which we will begin to pilot shortly. The concept is to educate WorldCat about the millions of new digital manifestations for print items being produced. During the past 35 years, librarians have built a comprehensive representation of print materials and holdings in WorldCat item-by-item. However, as we move into a more digital world through the production of born-digital materials and the high-volume reformatting of our print heritage, it is impractical to catalog these new manifestations via traditional workflows. The OCLC eContent Synchronization program is one example of how OCLC is moving to address the need to ingest metadata representing digital works on an industrial scale. Through strategic alliances with key digital content producers and automated processing, new digital surrogate records will be created to increase the visibility of and access to content at the point of need. While the eContent Synchronization program is an important initiative for visibility and access, of equal importance is the process of registering the existence of the preservation copies of these digital items.
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
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
The work which is presented in this report is part of a Norwegian epidemiological project, carried out in cooperation between Institutt for Energiteknikk (IFE), the Norwegian Cancer Registry (NCR) and the Norwegian Radiation Protection Authority (NRPA). The project has been partially financed by the Norwegian Research Council. Originating from the Norwegian project, a number of similar projects have been started or are in the planning stage in a number of European countries. The present report lays the ground for estimation of individual exposure histories to cosmic radiation of pilots employed by the Scandinavian Airline System (SAS). The results presented in this report (radiation doserates for the different types of aircraft in the different years) will, in a later stage of the project, be utilized to estimate the individual radiation exposure histories. The major sources of information used as basis for this work is the collection of old SAS time tables found in the SAS Museum at Fornebu Airport in Oslo, and information provided by members of the Pilots Associations.
Morrow, Robert W.; Fletcher, Jason; Kelly, Kim F.; Shea, Laura A.; Spence, Maureen M.; Sullivan, Janet N.; Cerniglia, Joan R.; Yang, YoonJung
Introduction: To support the adoption of guideline concordant care by primary care practices, the New York Diabetes Coalition (NYDC) promoted use of an electronic diabetes registry and developed an interactive educational module on using the registry and improving patient communication. The NYDC hypothesized that use of a registry with immediate…
Stagni, F.; McNab, A.; Luzzi, C.; Krzemien, W.; consortium, DIRAC
In the last few years, new types of computing models, such as IAAS (Infrastructure as a Service) and IAAC (Infrastructure as a Client), gained popularity. New resources may come as part of pledged resources, while others are in the form of opportunistic ones. Most but not all of these new infrastructures are based on virtualization techniques. In addition, some of them, present opportunities for multi-processor computing slots to the users. Virtual Organizations are therefore facing heterogeneity of the available resources and the use of an Interware software like DIRAC to provide the transparent, uniform interface has become essential. The transparent access to the underlying resources is realized by implementing the pilot model. DIRAC’s newest generation of generic pilots (the so-called Pilots 2.0) are the “pilots for all the skies”, and have been successfully released in production more than a year ago. They use a plugin mechanism that makes them easily adaptable. Pilots 2.0 have been used for fetching and running jobs on every type of resource, being it a Worker Node (WN) behind a CREAM/ARC/HTCondor/DIRAC Computing element, a Virtual Machine running on IaaC infrastructures like Vac or BOINC, on IaaS cloud resources managed by Vcycle, the LHCb High Level Trigger farm nodes, and any type of opportunistic computing resource. Make a machine a “Pilot Machine”, and all diversities between them will disappear. This contribution describes how pilots are made suitable for different resources, and the recent steps taken towards a fully unified framework, including monitoring. Also, the cases of multi-processor computing slots either on real or virtual machines, with the whole node or a partition of it, is discussed.
Full Text Available The pilot certification process is an ambitious, nationwide endeavor designed to motivate important changes in life sciences education that are in line with the recommendations of the 2011 Vision and Change Report: A Call to Action (American Association for the Advancement of Science [AAAS], 2011. It is the goal of the certification process to acknowledge departments that have progressed towards full implementation of the tenets of Vision and Change and to motivate departments that have not begun to adopt the recommendations to consider doing so. More than 70 life science departments applied to be part of the pilot certification process, funded by a National Science Foundation grant, and eight were selected based on initial evidence of transformed and innovative educational practices. The programs chosen represent a wide variety of schools, including two-year colleges, liberal-arts institutions, regional comprehensive colleges, research universities and minority serving institutions. Outcomes from this pilot were released June 1, 2015 (www.pulsecommunity.org, with all eight programs being recognized as having progressed along a continuum of change. Five levels of achievement were defined as PULSE Pilot Progression Levels. Of the eight departments in the pilot, one achieved “PULSE Progression Level III: Accomplished”. Six departments achieved “PULSE Progression Level II: Developing” and one pilot department achieved “PULSE Progression Level I: Beginning”. All of the schools have made significant movement towards the recommendations of Vision and Change relative to a traditional life sciences curriculum. Overall, the response from the eight pilot schools has been positive.
Zaman, Babar; Khandekar, Rajiv; Al Shahwan, Sami; Song, Jonathan; Al Jadaan, Ibrahim; Al Jiasim, Leyla; Owaydha, Ohood; Asghar, Nasira; Hijazi, Amar; Edward, Deepak P
In this brief communication, we present the steps used to establish a web-based congenital glaucoma registry at our institution. The contents of a case report form (CRF) were developed by a group of glaucoma subspecialists. Information Technology (IT) specialists used Lime Survey softwareTM to create an electronic CRF. A MY Structured Query Language (MySQL) server was used as a database with a virtual machine operating system. Two ophthalmologists and 2 IT specialists worked for 7 hours, and a biostatistician and a data registrar worked for 24 hours each to establish the electronic CRF. Using the CRF which was transferred to the Lime survey tool, and the MYSQL server application, data could be directly stored in spreadsheet programs that included Microsoft Excel, SPSS, and R-Language and queried in real-time. In a pilot test, clinical data from 80 patients with congenital glaucoma were entered into the registry and successful descriptive analysis and data entry validation was performed. A web-based disease registry was established in a short period of time in a cost-efficient manner using available resources and a team-based approach.
Rabari, Anil [NSTAR Electric, Manchester, NH (United States); Fadipe, Oloruntomi [NSTAR Electric, Manchester, NH (United States)
NSTAR Electric & Gas Corporation (“the Company”, or “NSTAR”) developed and implemented a Smart Grid pilot program beginning in 2010 to demonstrate the viability of leveraging existing automated meter reading (“AMR”) deployments to provide much of the Smart Grid functionality of advanced metering infrastructure (“AMI”), but without the large capital investment that AMI rollouts typically entail. In particular, a central objective of the Smart Energy Pilot was to enable residential dynamic pricing (time-of-use “TOU” and critical peak rates and rebates) and two-way direct load control (“DLC”) by continually capturing AMR meter data transmissions and communicating through customer-sited broadband connections in conjunction with a standardsbased home area network (“HAN”). The pilot was supported by the U.S. Department of Energy’s (“DOE”) through the Smart Grid Demonstration program. NSTAR was very pleased to not only receive the funding support from DOE, but the guidance and support of the DOE throughout the pilot. NSTAR is also pleased to report to the DOE that it was able to execute and deliver a successful pilot on time and on budget. NSTAR looks for future opportunities to work with the DOE and others in future smart grid projects.
Klinkhammer-Schalke, Monika; Gerken, Michael; Barlag, Hagen; Tillack, Anett
Efforts in nationwide quality management for oncology have so far failed to comprehensively document all levels of care. New organizational structures such as population-based clinical cancer registries or certified organ cancer centers were supposed to solve this problem more sufficiently, but they have to be accompanied by valid trans-sectoral documentation and evaluation of clinical data. To measure feasibility and qualitative effectiveness of guideline implementation we approached this problem with a nationwide investigation from 2000 to 2011. The rate of neoadjuvant radio/chemotherapy in stage UICC II/III rectum cancer, cut-off point 80% for separating good from insufficient quality, was used as a quality indicator. The nationwide analysis indicates an increase from 45% to 70%, but only with the implementation strategy of CME. The combination of new structures, evidence-based quality indicators, organ cancer center and clinical cancer registries has shown good feasibility and seems promising. Copyright © 2015. Published by Elsevier GmbH.
Full Text Available Digital ulcers are a very frequent complication of systemic sclerosis affecting about half of the SSc patients, and about 75% of the affected patients have their first DU episode within 5 years from their first non-Raynaud symptom. The lack of adequate classification criteria as well as the lack of knowledge of the development of DU have contributed to the opening of specific registries to better understand the natural history of these lesions. For these reason, specific disease registries play a fundamental role in this field of research. Thanks to the systematic collection of data and their subsequent analysis and comparison between different cohorts, it is possible to improve understanding of the underlying trigger mechanisms of DU development and to determine temporal trends. In the future, the development of recommendations for the management of DU remains of pivotal importance to prevent DU development and obtain rapid healing as well as reduction of pain and disability.
Oz, Inbal; Itkin, Yaron; Buchwalter, Asaf; Akulov, Katherine; Hod, Oded
At dry and clean material junctions of rigid materials the corrugation of the sliding energy landscape is dominated by variations of Pauli repulsions. These occur when electron clouds centered around atoms in adjacent layers overlap as they slide across each other. In such cases there exists a direct relation between interfacial surface (in)commensurability and superlubricity, a frictionless and wearless tribological state. The Registry Index is a purely geometrical parameter that quanti?es the degree of interlayer commensurability, thus providing a simple and intuitive method for the prediction of sliding energy landscapes at rigid material interfaces. In the present study, we extend the applicability of the Registry Index to non-parallel surfaces, using a model system of nanotubes motion on ?at hexagonal materials. Our method successfully reproduces sliding energy landscapes of carbon nanotubes on Graphene calculated using a Lennard-Jones type and the Kolmogorov-Crespi interlayer potentials. Furthermore, it...
Ellesøe, Sabrina Gade; Jensen, Anders Boeck; Ängquist, Lars Henrik
BACKGROUND: Congenital heart disease (CHD) occurs in approximately 1% of all live births, and 3% to 8% of these have until now been considered familial cases, defined as the occurrence of two or more affected individuals in a family. The validity of CHD diagnoses in Danish administrative registry...... data has only been studied previously in highly selected patient populations. These studies identified high positive predictive values (PPVs) and recurrence risk ratios (RRRs-ratio between probabilities of CHD given family history of CHD and no family history). However, the RRR can be distorted...... if registry data are used indiscriminately. Here, we investigated the consequences of misclassifications for the RRR using validated diagnoses on Danish patients with familial CHD. METHODS: Danish citizens are assigned a civil registration number (CPR number) at birth or immigration, which acts as a unique...
Chorostowska-Wynimko, Joanna; Struniawski, Radoslaw; Sliwinski, Paweł; Wajda, Beata; Czajkowska-Malinowska, Małgorzata
The alpha-1 antitrypsin deficiency (AATD) targeted screening program, together with the National Registry, were established in Poland in 2010 soon after the AATD diagnostics became available. Between 2010 and 2014 a total of 2525 samples were collected from respiratory patients countrywide; 55 patients with severe AAT deficiency or rare mutations were identified and registered, including 36 PiZZ subjects (65%). The majority of AATD patients were diagnosed with COPD (40%) or emphysema (7%), but also with bronchial asthma (16%) and bronchiectasis (13%). Therefore, the registry has proved instrumental in setting-up the AATD-dedicated network of respiratory medical centres in Poland. Since augmentation therapy is not reimbursed in our country, the smoking cessation guidance, optimal pharmacotherapy of respiratory symptoms as well the early detection, and effective treatment of exacerbations is absolutely essential.
The FAA has available hundreds of computer testing centers nationwide. These testing centers offer the full range of airman knowledge tests including military competence, instrument foreign pilot, and pilot examiner predesignated tests. Refer to appe...
US Fish and Wildlife Service, Department of the Interior — This report summarizes the ServCat pilot project and offers recommendations for the full-scale implementation of the database. During the pilot project a total of...
Dogac, Asuman; Cingil, Ibrahim; Laleci, Gokce; Kabak, Yildiray
In this paper we describe a framework for exploiting the semantics of Web services through UDDI registries. As a part of this framework, we extend the DAML-S upper ontology to describe the functionality we find essential for e-businesses. This functionality includes relating the services with electronic catalogs, describing the complementary services and finding services according to the properties of products or services. Once the semantics is defined, there is a need for a mechanism in the ...
Full Text Available BACKGROUND: Pleural mesothelioma is a rare tumour associated with exposure to asbestos fibres. Fewer than than one-quarter of cases registered in the Quebec Tumour Registry (QTR have been compensated as work-related. While establishing a surveillance system, this led to questioning as to whether there has been over-registration of cases that are not authentic pleural mesotheliomas in the QTR.
Brent, Jeffrey; Wax, Paul M; Schwartz, Tayler; Kleinschmidt, Kurt C; Engebretsen, Kristin; Beuhler, Michael
The American College of Medical Toxicology Case Registry was established in 2010 as a method of identifying cases cared for by medical toxicologists at participating institutions. The Registry allows for the extraction of information from medical records making it the most robust multicenter database on chemical toxicities in existence. The current report is a summary of the data collected in 2010. All cases seen by medical toxicologists at participating institutions were entered on a database. Information characterizing patients entered in 2010 was tabulated. Over the course of 2010, the number of institutions contributing cases grew from 4 to 50. Three thousand nine hundred forty-eight cases were entered. Emergency departments were the most common source of consultations, accounting for approximately 50% of the cases. The most common reason for consultations was for pharmaceutical overdoses, which occurred in 42% of the patients. The most common classes of agents were non-opioid analgesics (14%), sedative/hypnotics/muscle relaxants (10%), ethanol (8%), and opioids (8%). N-acetylcysteine was the most common antidote used, followed by opioid antagonists, sodium bicarbonate, and physostigmine. Anti-crotalidae Fab fragments were administered in 72% of the cases in which an antivenin was used. Signals were detected suggesting the possibility that amlodipine and metoprolol were associated with greater toxicity than had been previously recognized. The Registry can identify and characterize patients who have sufficient toxicity to require a consultation by a medical toxicologist. Hypotheses for further investigation emerged from the data. The Registry appears to be a potentially powerful tool for toxicovigilance and research.
Ozen, Seza; Demirkaya, Erkan; Amaryan, Gayane
BACKGROUND AND AIM: Familial Mediterranean fever (FMF) is an autoinflammatory disease caused by mutations of the MEFV gene. We analyse the impact of ethnic, environmental and genetic factors on the severity of disease presentation in a large international registry. METHODS: Demographic, genetic...... history. CONCLUSIONS: Eastern Mediterranean FMF patients have a milder disease phenotype once they migrate to Europe, reflecting the effect of environment on the expression of a monogenic disease....
Kehinde O. Raji; Lauren Payne; Suephy C. Chen
The goal of our study was to determine current melanoma reporting methods available to dermatologists and dermatopathologists and quantify changes in reporting methods from 2012 to 2014. A cross-sectional study design was utilized consisting of website perusal of reporting procedures, followed up by telephone and email inquiry of reporting methods from every state cancer registry. This study was conducted over a six-month period from February to August 2014. A previous similar survey was cond...
Hansen, Steinbjørn; Nielsen, Jan; Laursen, René J; Rasmussen, Birthe Krogh; Nørgård, Bente Mertz; Gradel, Kim Oren; Guldberg, Rikke
The Danish Neuro-Oncology Registry (DNOR) is a nationwide clinical cancer database that has prospectively registered data on patients with gliomas since January 2009. The purpose of this study was to describe the establishment of the DNOR and further to evaluate the database completeness of patient registration and validity of data. The completeness of the number of patients registered in the database was evaluated in the study period from January 2009 through December 2014 by comparing cases reported to the DNOR with the Danish National Patient Registry and the Danish Pathology Registry. The data validity of important clinical variables was evaluated by a random sample of 100 patients from the DNOR using the medical records as reference. A total of 2241 patients were registered in the DNOR by December 2014 with an overall patient completeness of 92 %, which increased during the study period (from 78 % in 2009 to 96 % in 2014). Medical records were available for all patients in the validity analyses. Most variables showed a high agreement proportion (56-100 %), with a fair to good chance-corrected agreement (k = 0.43-1.0). The completeness of patient registration was very high (92 %) and the validity of the most important patient data was good. The DNOR is a newly established national database, which is a reliable source for future scientific studies and clinical quality assessments among patients with gliomas.
Yu, Mandi; Reiter, Jerome Phillip; Zhu, Li; Liu, Benmei; Cronin, Kathleen A; Feuer, Eric J Rocky
The National Cancer Institute's Surveillance, Epidemiology, and End Results Program releases research files of cancer registry data. These files include geographic information at the county level, but no finer. Access to finer geography, such as census tract identifiers, would enable richer analyses-for example, examination of health disparities across neighborhoods. To date, tract identifiers have been left off the research files because they could compromise the confidentiality of patients' identities. We present an approach to inclusion of tract identifiers based on multiply imputed, synthetic data. The idea is to build a predictive model of tract locations, given patient and tumor characteristics, and randomly simulate the tract of each patient by sampling from this model. For the predictive model, we use multivariate regression trees fitted to the latitude and longitude of the population centroid of each tract. We implement the approach in the registry data from California. The method results in synthetic data that reproduce a wide range (but not all) of analyses of census tract socioeconomic cancer disparities and have relatively low disclosure risks, which we assess by comparing individual patients' actual and synthetic tract locations. We conclude with a discussion of how synthetic data sets can be used by researchers with cancer registry data. Published by Oxford University Press on behalf of the Johns Hopkins Bloomberg School of Public Health 2017. This work is written by (a) US Government employee(s) and is in the public domain in the US.
Tzoran, Inna; Brenner, Benjamin; Papadakis, Manolis; Di Micco, Pierpaolo; Monreal, Manuel
The Registro Informatizado de Enfermedad TromboEmbólica (RIETE Registry) is an ongoing, international, prospective registry of consecutive patients with acute venous thromboembolism (VTE) designed to gather and analyze data on treatment patterns and outcomes in patients with acute VTE. It started in Spain in 2001, and 6 years later the database was translated into English with the aim to expand the Registry to other countries. In contrast to randomized controlled trials, there is no imposed experimental intervention: the management is determined solely by physicians. Thus, it provides data on patients with VTE in a real-world situation with an unselected patient population. Data from RIETE are hypothesis-generating and provide feedback from real-world clinical situations. So far, we learned about the natural history of VTE in patients with relative or absolute contraindications to anticoagulant therapy. We also learned interesting aspects on the natural history of VTE, and we built a number of prognostic scores to identify VTE patients at low, moderate, or high risk for adverse outcome. PMID:25386353
Full Text Available The Registro Informatizado de Enfermedad TromboEmbólica (RIETE Registry is an ongoing, international, prospective registry of consecutive patients with acute venous thromboembolism (VTE designed to gather and analyze data on treatment patterns and outcomes in patients with acute VTE. It started in Spain in 2001, and 6 years later the database was translated into English with the aim to expand the Registry to other countries. In contrast to randomized controlled trials, there is no imposed experimental intervention: the management is determined solely by physicians. Thus, it provides data on patients with VTE in a real-world situation with an unselected patient population. Data from RIETE are hypothesis-generating and provide feedback from real-world clinical situations. So far, we learned about the natural history of VTE in patients with relative or absolute contraindications to anticoagulant therapy. We also learned interesting aspects on the natural history of VTE, and we built a number of prognostic scores to identify VTE patients at low, moderate, or high risk for adverse outcome.
Akoudad, H; El Khorb, N; Sekkali, N; Mechrafi, A; Zakari, N; Ouaha, L; Lahlou, I
Acute myocardial infarction is the most dangerous complication of coronary atherothrombosis. There are several disparities in regard to its management around the world. The aim of this study is to analyze the specificities of management of acute myocardial infarction in Morocco. FES-AMI (Fès Acute Myocardial Infarction) is a prospective monocentric registry conducted in cardiology department of Hassan II university hospital in Fès. In this registry, we enrolled patients with acute myocardial infarction who presented within 5 days after symptom onset. From January 2005 to August 2015, we enrolled 1835 patients. Seventy-five percent of patients were males and mean age was 60 years old. Fifty-one percent of patients were smokers, 27% were hypertensives and 14% were diabetics. Sixty-six percent of patients had more than 2 risk factors. Time from symptom onset to hospital admission was less than six hours for 40% of the patients. Thirty-six percent of patients were admitted more than twelve hours after the onset of chest pain. Only 37% of patients received reperfusion therapy, 31% with in-hospital thrombolysis and 6% with primary angioplasty. In-hospital mortality was 7.6%. The patients enrolled in our registry have late presentation of acute myocardial infarction and less rate of reperfusion therapy. Furthermore, the majority of our patients have multiple risk factors and this result underlines the failure of preventive interventions. Copyright © 2015 Elsevier Masson SAS. All rights reserved.
Smits, Jacqueline M; Niesing, Jan; Breidenbach, Thomas; Collett, Dave
A European patient registry to track the outcomes of organ transplant recipients does not exist. As knowledge gleaned from large registries has already led to the creation of standards of care that gained widespread support from patients and healthcare providers, the European Union initiated a project that would enable the creation of a European Registry linking currently existing national databases. This report contains a description of all functional, technical, and legal prerequisites, which upon fulfillment should allow for the seamless sharing of national longitudinal data across temporal, geographical, and subspecialty boundaries. To create a platform that can effortlessly link multiple databases and maintain the integrity of the existing national databases crucial elements were described during the project. These elements are: (i) use of a common dictionary, (ii) use of a common database and refined data uploading technology, (iii) use of standard methodology to allow uniform protocol driven and meaningful long-term follow-up analyses, (iv) use of a quality assurance mechanism to guarantee completeness and accuracy of the data collected, and (v) establishment of a solid legal framework that allows for safe data exchange. © 2012 The Authors Transplant International © 2012 European Society for Organ Transplantation. Published by Blackwell Publishing Ltd.
Knapp, R.M.; McInerney, M.J.; Menzie, D.E.; Coates, J.D.; Chisholm, J.L.
A multi-well microbially enhanced oil recovery field pilot has been performed in the Southeast Vassar Vertz Sand Unit in Payne County, Oklahoma. The primary emphasis of the experiment was preferential plugging of high permeability zones for the purpose of improving waterflood sweep efficiency. Studies were performed to determine reservoir chemistry, ecology, and indigenous bacteria populations. Growth experiments were used to select a nutrient system compatible with the reservoir that encouraged growth of a group of indigenous nitrate-using bacteria and inhibit growth of sulfate-reducing bacteria. A specific field pilot area behind an active line drive waterflood was selected. Surface facilities were designed and installed. Injection protocols of bulk nutrient materials were prepared to facilitate uniform distribution of nutrients within the pilot area. By the end of December, 1991, 82.5 tons (75.0 tonnes) of nutrients had been injected in the field. A tracer test identified significant heterogeneity in the SEVVSU and made it necessary to monitor additional production wells in the field. The tracer tests and changes in production behavior indicate the additional production wells monitored during the field trial were also affected. Eighty two and one half barrels (13.1 m[sup 3]) of tertiary oil have been recovered. Microbial activity has increased CO[sub 2] content as indicated by increased alkalinity. A temporary rise in sulfide concentration was experienced. These indicate an active microbial community was generated in the field by the nutrient injection. Pilot area interwell pressure interference test results showed that significant permeability reduction occurred. The interwell permeabilities in the pilot area between the injector and the three pilot production wells were made more uniform which indicates a successful preferential plugging enhanced oil recovery project.
Jordan, Christopher P; Freedenberg, Vicki; Wang, Yongfei; Curtis, Jeptha P; Gleva, Marye J; Berul, Charles I
In 2010, the National Cardiovascular Data Registry enhanced pediatric, nonatherosclerotic structural heart disease and congenital heart disease (CHD) data collection. This report characterizes CHD and pediatric patients undergoing implantable cardioverter defibrillator implantation. In this article, we report implantable cardioverter defibrillator procedures (April 2010 to December 2012) in the registry for 2 cohorts: (1) all patients with CHD (atrial septal defect, ventricular septal defect, tetralogy of Fallot, Ebstein anomaly, transposition of the great vessels, and common ventricle) and (2) patients Heart Association class. There were 3139 CHD procedures, 1601 for patients Pediatric patients had 935 (58.4%) primary prevention and 588 (36.7%) secondary prevention devices. Primary prevention had higher New York Heart Association class. Nontransvenous age (35.9 ± 23.2 versus 40.1 ± 24.6 years; P=0.05) and nontransvenous height (167.1 ± 18.9 cm; range, 53-193 cm versus 170.4 ± 13.1 cm; range, 61-203 cm; Ppediatrics had similar rates of transvenous (97%) and nontransvenous (3%) leads and did not differ from the overall registry. Transposition of the great vessels and common ventricle had higher rates of nontransvenous leads. Primary prevention exceeds secondary prevention for CHD and pediatrics. Nontransvenous lead patients were younger, with higher rates of transposition of the great vessels and common ventricle patients compared with transvenous lead patients. © 2014 American Heart Association, Inc.
Vasen, Hans F A; Velthuizen, Mary E; Kleibeuker, Jan H; Menko, Fred H; Nagengast, Fokke M; Cats, Annemieke; van der Meulen-de Jong, Andrea E; Breuning, Martijn H; Roukema, J.A.; van Leeuwen-Cornelisse, Inge; de Vos Tot Nederveen Cappel, Wouter H; Wijnen, Juul T
The Dutch Hereditary Cancer Registry was established in 1985 with the support of the Ministry of Health (VWS). The aims of the registry are: (1) to promote the identification of families with hereditary cancer, (2) to encourage the participation in surveillance programs of individuals at high risk,
Torkilsheyggi, Arnvør Martinsdóttir á; Hertzum, Morten
Pilot implementations provide users with real-work experiences of how a system will affect their daily work before the design of the system is finalized. On the basis of a pilot implementation of a system for coordinating the transport of patients by hospital porters, we investigate pilot...... implementation as a method for participatory design. We find that to foster participation and learning about user needs a pilot implementation must create a space for reflecting on use, in addition to the space for using the pilot system. The space for reflection must also exist during the activities preparing...
Neisig, Margit; Glimø, Helle; Holm, Catrine Granzow
This article deals with a systemic perspective on transition. The field of study addressed is a pilot project as enabler of transition in a highly complex polycentric context. From a Luhmannian systemic approach, a framework is created to understand and address barriers of change occurred using...
Viet AL; Fiolet D; Voortman JK; Rover C de; Hanning C; Uitenbroek D; Loon AJM van; PZO; GGD Achterhoek; GGD Midden Holland; GG&GD Amsterdam
As a part of the project on the Local and National Monitor for Public Health several pilot studies were carried out in three Municipal Health Centres (GGDs). The first aim was to investigate the feasibility of a physical examination at the health centre in combination with a health interview (or
Ploos van Amstel, Sophie; Noordzij, Marlies; Warady, Bradley A; Cano, Francisco; Craig, Jonathan C; Groothoff, Jaap W; Ishikura, Kenji; Neu, Alicia; Safouh, Hesham; Xu, Hong; Jager, Kitty J; Schaefer, Franz
To describe the factors affecting the incidence of renal replacement therapy (RRT) among children, information from RRT registries is required. We aimed to give an overview of existing pediatric RRT registries worldwide, identify regions with a need to commence or increase data collection on pediatric RRT, and provide a rationale for developing a global RRT registry. A survey assessing pediatric RRT registry status was sent to International Pediatric Nephrology Associateion (IPNA) members in 127 countries in January 2016. The survey was complemented by a systematic literature search for active pediatric RRT registries. Complete survey responses were retrieved from 94 countries (representing 86.2% of the world childhood population), with 84 (81.2%) having the means to provide RRT to children, given that there are no other limitations such as financial, social, or religious restraints. Fifty-one (35.3%) countries had national registries for both dialysis and transplantation, nine (30.0%) either had a dialysis or a transplant registry, six participated in international registries only (2.7%), and in 18 (13.2%), children on RRT were not followed in any registry. The search identified 92 pediatric RRT registries, primarily national registries located in Europe, North America, and Asia. Although pediatric RRT can be provided in 84 countries representing 81.2% of the world's childhood population, national pediatric RRT registries are unavailable in many countries. To improve knowledge about the incidence and outcomes of pediatric RRT around the globe, an international population-based pediatric RRT registry has recently been initiated.
Kolias, Angelos G; Bulters, Diederik O; Cowie, Christopher J; Wilson, Mark H; Afshari, Fardad T; Helmy, Adel; Broughton, Ellie; Joannides, Alexis J; Zebian, Bassel; Harrisson, Stuart E; Hill, Ciaran S; Ahmed, Animul I; Barone, Damiano G; Thakur, Bhaskar; McMahon, Catherine J; Adlam, David M; Bentley, Robert P; Tolias, Christos M; Mitchell, Patrick M; Whitfield, Peter C; Critchley, Giles R; Belli, Antonio; Brennan, Paul M; Hutchinson, Peter J
The increasing utilisation of decompressive craniectomy for traumatic brain injury and stroke has led to an increase in the number of cranioplasties undertaken. Cranioplasty is also undertaken following excision of tumours originating from or invading the skull vault, removal of bone flaps due to post-operative infection, and decompressive craniectomy for the management of rarer causes of brain oedema and/or refractory intracranial hypertension. The existing literature which mainly consists of single-centre, retrospective studies, shows a significant variation in practice patterns and a wide range of morbidity. There also exists a need to measure the outcome as perceived by the patients themselves with patient reported outcome measures (PROMs; functional outcome, quality of life, satisfaction with cosmesis). In the UK, the concept of long-term surveillance of neurosurgical implants is well established with the UK shunt registry. Based on this background, we propose to establish the UK Cranial Reconstruction Registry (UKCRR). The overarching aim of the UKCRR is to collect high-quality data about cranioplasties undertaken across the UK and Ireland in order to improve outcomes for patients. Any patient undergoing reconstruction of the skull vault with autologous bone, titanium, or synthetic material in participating units will be eligible for inclusion. Data will be submitted directly by participating units to the Outcome Registry Intervention and Operation Network secure platform. A Steering Committee will be responsible for overseeing the strategic direction and running of the UKCRR. These will include re-operation due to a cranioplasty-related issue, surgical site infection, re-admission due to a cranioplasty-related issue, unplanned post-operative escalation of care, adverse events, length of stay in admitting unit, destination at discharge from admitting unit, mortality at discharge from admitting unit, neurological status and PROMs during routine follow-up. The
Gräsner, Jan-Thorsten; Bossaert, Leo
Major European institutions report cardiovascular disease (CVD) as the first cause of death in adults, with cardiac arrest and sudden death due to coronary ischaemia as the primary single cause. Global incidence of CVD is decreasing in most European countries, due to prevention, lifestyle and treatment. Mortality of acute coronary events inside the hospital decreases more rapidly than outside the hospital. To improve the mortality of cardiac arrest outside the hospital, reliable epidemiological and process figures are essential: "we can only manage what we can measure". Europe is a patchwork of 47 countries (total population of 830 million), with a 10-fold difference in incidence of coronary heart disease between North and South, East and West, and a 5-fold difference in number of EMS-treated cardiac arrest (range 17-53/1000,000/year). Epidemiology of cardiac arrest should not be calculated as a European average, but it is appropriate to describe the incidence of cardiac arrest, the resuscitation process, and the outcome in each of the European regions, for benchmarking and quality management. Epidemiological reports of cardiac arrest should specify definitions, nominator (number of cases) and denominator (study population). Recently some regional registries in North America, Japan and Europe fulfilled these conditions. The European Registry of Cardiac Arrest (EuReCa) has the potential to achieve these objectives on a pan-European scale. For operational applications, the Utstein definition of "Cardiac arrest" is used which includes the potential of survival. For application in community health, the WHO definition of "sudden death" is frequently used, describing the mode of death. There is considerable overlap between both definitions. But this explains that no single method can provide all information. Integrating data from multiple sources (local, national, multinational registries and surveys, death certificates, post-mortem reports, community statistics, medical
Ali, T; Schved, J F
Creating a national registry for bleeding disorders is a major step in establishing a National Hemophilia Care Program in all countries. Creating such a registry which would contain accurate and regularly updated data, including laboratory analysis confirmed by a reference laboratory established at the Syrian Hemophilia Society. Blood samples were drawn and analysed in the Society reference laboratory for the following screening tests: prothrombin time (PT), APTT and coagulation factor assays. Inhibitor detection and VWF RiCof were performed depending on the result of the screening tests. HBs Ag, anti-HCV, anti-HIV 1+2 and syphilis tests were also performed to detect transfusion transmitted agents (TTA). Diagnosis of the bleeding disorder type was confirmed for 760 of these cases. Among the 760 confirmed patients, 82.5% had haemophilia. Among these, 89.6%were haemophilia A; 10.4% were haemophilia B; 8.3% had VWD; 9.2% had other rare bleeding disorders as follows: 1.2% FVII deficiency, 0.7% FV deficiency, 1.8% F1 deficiency, 0.4% FX deficiency, 1.4% platelets dysfunctions (mainly Glanzmann Thrombasthenia) and 3.7% had combined FVIII and FV deficiency. Eighty (21.3%) cases of 375 screened for transfusion transmitted agents were positive for at least one infection: 0.5% were HBsAg positive, 19.7% were anti-HCV positive, 0.8% had combined HBsAg and anti-HCV positivity and 0.3% was anti-Syphilis positive. All patients were negative for HIV1 and HIV2. The preliminary data presented here follow known data on haemophilia A, haemophilia B and VWD disease. This registry will certainly help in improving haemophilia care in Syria. © 2012 Blackwell Publishing Ltd.
He, Jie; Wang, Wei; Chen, Nengcheng; Chen, Zeqiang; Chen, Jiaying
Antarctica plays a key role in many scientific questions, of which those related to global climate change are probably the most prominent examples. There are many researches on Antarctic are carried out at present, and some special institutes sponsored by public and private communities are responsible for antarctica data management and maintenance. Antarctic Spatial Data Infrastructure (AntSDI) sponsored by SCAR's Standing Committee on Antarctic Geographic Information (SC-AGI) is the one responsible for Antarctica spatial data maintenance and sharing by means of OGC standard and specification. Antarctica Spatial Data Infrastructure (AntSDI) has already collected huge volumes of geospatial data and offer an opening geospatial information service. In order to management and use Geospatial data efficiently, and enable most of the users can access to Geospatical data and service at will, we firstly must registry data and service into one or more registry center, then we should construct a building system which can supply users a uniform interface to access data and service in registry center and user also can add their own data and service to system and become part of system's capability. in this paper we present GeoAnt, a prototype interoperable AntSDI building system. GeoAnt is a three-tier standard-based open geospatial web service system which fully automates data discovery, access, and integration steps of the geospatial information discovery process under the interoperable service framework. The paper discusses the system architecture, the individual components of the system and the use of the system in the international project- Grove Mountains GIService Portal (GMGP).
Schraub, S; Hurteloup, P; hurteloup, P; Carbillet, J P
Cancer Registry of Doubs (471 845 h, 5 260 km2), an area located in east part of France close the Swiss frontier, gave cancer rates in 1977 and 1978, for male and female, for urban and rural areas, with interesting comparisons with death in the period. Histological information was available in a percentage of 0.88, cases variable with different locations. It is possible to analyse the different histological sub types and grading among some cancer sites (gastric, large bowel, bronchus). Different modalities of treatment (surgery, radiotherapy, hormono and immunotherapy) applied to the 2 783 cases of cancer are analysed.
Thomsen, SF; Ulrik, Charlotte Suppli; Kyvik, KO
OBJECTIVE: To estimate to what extent the same genetic and environmental risk factors influence asthma, hay fever and eczema. DESIGN: From the nationwide Danish Twin Registry, twin cohorts born between 1953 and 1982 were contacted for a questionnaire survey, and a total of 29 183 twin individuals...... (86%) responded. Subjects were classified as cases when responding affirmatively to three questions about the lifetime occurrence of asthma, hay fever and eczema. Variance components twin analysis was conducted using maximum likelihood methods. RESULTS: The phenotypic (within-subject) correlations...
Pedersen, Sidsel Arnspang; Schmidt, Sigrun Alba Johannesdottir; Klausen, Siri
BACKGROUND: The nationwide Danish Cancer Registry and the Danish Melanoma Database both record data on melanoma for purposes of monitoring, quality assurance and research. However, the data quality of the Cancer Registry and the Melanoma Database has not been formally evaluated. METHODS: We...... estimated the positive predictive value (PPV) of melanoma diagnosis for random samples of 200 patients from the Cancer Registry (n=200) and the Melanoma Database (n=200) during 2004-2014, using the Danish Pathology Registry as 'gold-standard' reference. We further validated tumor characteristics...... in the Cancer Registry and the Melanoma Database. Additionally, we estimated the PPV of in situ melanoma diagnoses in the Melanoma Database, and the sensitivity of melanoma diagnoses in 2004-2014. RESULTS: The PPVs of melanoma in the Cancer Registry and the Melanoma Database were 97% (95% CI, 94-99) and 100...
Zehtabchi, Shahriar; Nishijima, Daniel K; McKay, Mary Pat; Mann, N Clay
Trauma registries have been designed to serve a number of purposes, including quality improvement, injury prevention, clinical research, and policy development. Since their inception over 30 years ago, there are increasingly more institutions with trauma registries, many of which submit data to a national trauma registry. The goal of this review is to describe the history, logistics, and characteristics of trauma registries and their contribution to emergency medicine and trauma research. Discussed in this review are the limitations of trauma registries, such as variability in quality and type of the collected data, absence of data pertaining to long-term and functional outcomes, prehospital information, and complications as well as other methodologic obstacles limiting the utility of registry data in clinical and epidemiologic research. © 2011 by the Society for Academic Emergency Medicine.
Wieschowski, Susanne; Silva, Diego S; Strech, Daniel
Publication bias in animal research, its extent, its predictors, and its potential countermeasures are increasingly discussed. Recent reports and conferences highlight the potential strengths of animal study registries (ASRs) in this regard. Others have warned that prospective registration of animal studies could diminish creativity, add administrative burdens, and complicate intellectual property issues in translational research. A literature review and 21 international key-informant interviews were conducted and thematically analyzed to develop a comprehensive matrix of main- and subcategories for potential ASR-related strengths, weaknesses, facilitators, and barriers (SWFBs). We identified 130 potential SWFBs. All stakeholder groups agreed that ASRs could in various ways improve the quality and refinement of animal studies while allowing their number to be reduced, as well as supporting meta-research on animal studies. However, all stakeholder groups also highlighted the potential for theft of ideas, higher administrative burdens, and reduced creativity and serendipity in animal studies. Much more detailed reasoning was captured in the interviews than is currently found in the literature, providing a comprehensive account of the issues and arguments around ASRs. All stakeholder groups highlighted compelling potential strengths of ASRs. Although substantial weaknesses and implementation barriers were highlighted as well, different governance measures might help to minimize or even eliminate their impact. Such measures might include confidentiality time frames for accessing prospectively registered protocols, harmonized reporting requirements across ASRs, ethics reviews, lab notebooks, and journal submissions. The comprehensive information gathered in this study could help to guide a more evidence-based debate and to design pilot tests for ASRs.
Full Text Available Publication bias in animal research, its extent, its predictors, and its potential countermeasures are increasingly discussed. Recent reports and conferences highlight the potential strengths of animal study registries (ASRs in this regard. Others have warned that prospective registration of animal studies could diminish creativity, add administrative burdens, and complicate intellectual property issues in translational research. A literature review and 21 international key-informant interviews were conducted and thematically analyzed to develop a comprehensive matrix of main- and subcategories for potential ASR-related strengths, weaknesses, facilitators, and barriers (SWFBs. We identified 130 potential SWFBs. All stakeholder groups agreed that ASRs could in various ways improve the quality and refinement of animal studies while allowing their number to be reduced, as well as supporting meta-research on animal studies. However, all stakeholder groups also highlighted the potential for theft of ideas, higher administrative burdens, and reduced creativity and serendipity in animal studies. Much more detailed reasoning was captured in the interviews than is currently found in the literature, providing a comprehensive account of the issues and arguments around ASRs. All stakeholder groups highlighted compelling potential strengths of ASRs. Although substantial weaknesses and implementation barriers were highlighted as well, different governance measures might help to minimize or even eliminate their impact. Such measures might include confidentiality time frames for accessing prospectively registered protocols, harmonized reporting requirements across ASRs, ethics reviews, lab notebooks, and journal submissions. The comprehensive information gathered in this study could help to guide a more evidence-based debate and to design pilot tests for ASRs.
..., recreational, private, commercial, or airline transport pilot may log pilot in command flight time for flights... duties of pilot in command holds a commercial or airline transport pilot certificate and aircraft rating... commercial pilot certificate and flight instructor certificate, and aircraft rating that is appropriate to...
Houser, Shannon H; Colquitt, Shannon; Clements, Kay; Hart-Hester, Susan
As the use of information technology within the healthcare setting increases, the impact of bridging registry data with electronic health records (EHRs) must be addressed. Current EHR implementation may create benefits as well as challenges to cancer registries in areas such as policies and regulations, data quality, reporting, management, staffing, and training. The purpose of this study was to assess 1) the status of EHR usage in cancer registries, 2) the impact of EHR usage on cancer regis...
Storf, Holger; Schaaf, Jannik; Kadioglu, Dennis; Göbel, Jens; Wagner, Thomas O F; Ückert, Frank
Meager amounts of data stored locally, a small number of experts, and a broad spectrum of technological solutions incompatible with each other characterize the landscape of registries for rare diseases in Germany. Hence, the free software Open Source Registry for Rare Diseases (OSSE) was created to unify and streamline the process of establishing specific rare disease patient registries. The data to be collected is specified based on metadata descriptions within the registry framework's so-called metadata repository (MDR), which was developed according to the ISO/IEC 11179 standard. The use of a central MDR allows for sharing the same data elements across any number of registries, thus providing a technical prerequisite for making data comparable and mergeable between registries and promoting interoperability.With OSSE, the foundation is laid to operate linked patient registries while respecting strong data protection regulations. Using the federated search feature, data for clinical studies can be identified across registries. Data integrity, however, remains intact since no actual data leaves the premises without the owner's consent. Additionally, registry solutions other than OSSE can participate via the OSSE bridgehead, which acts as a translator between OSSE registry networks and non-OSSE registries. The pseudonymization service Mainzelliste adds further data protection.Currently, more than 10 installations are under construction in clinical environments (including university hospitals in Frankfurt, Hamburg, Freiburg and Münster). The feedback given by the users will influence further development of OSSE. As an example, the installation process of the registry for undiagnosed patients at University Hospital Frankfurt is described in more detail.
Stagni, F.; Tsaregorodtsev, A.; McNab, A.; Luzzi, C.
In the last few years, new types of computing infrastructures, such as IAAS (Infrastructure as a Service) and IAAC (Infrastructure as a Client), gained popularity. New resources may come as part of pledged resources, while others are opportunistic. Most of these new infrastructures are based on virtualization techniques. Meanwhile, some concepts, such as distributed queues, lost appeal, while still supporting a vast amount of resources. Virtual Organizations are therefore facing heterogeneity of the available resources and the use of an Interware software like DIRAC to hide the diversity of underlying resources has become essential. The DIRAC WMS is based on the concept of pilot jobs that was introduced back in 2004. A pilot is what creates the possibility to run jobs on a worker node. Within DIRAC, we developed a new generation of pilot jobs, that we dubbed Pilots 2.0. Pilots 2.0 are not tied to a specific infrastructure; rather they are generic, fully configurable and extendible pilots. A Pilot 2.0 can be sent, as a script to be run, or it can be fetched from a remote location. A pilot 2.0 can run on every computing resource, e.g.: on CREAM Computing elements, on DIRAC Computing elements, on Virtual Machines as part of the contextualization script, or IAAC resources, provided that these machines are properly configured, hiding all the details of the Worker Nodes (WNs) infrastructure. Pilots 2.0 can be generated server and client side. Pilots 2.0 are the “pilots to fly in all the skies”, aiming at easy use of computing power, in whatever form it is presented. Another aim is the unification and simplification of the monitoring infrastructure for all kinds of computing resources, by using pilots as a network of distributed sensors coordinated by a central resource monitoring system. Pilots 2.0 have been developed using the command pattern. VOs using DIRAC can tune pilots 2.0 as they need, and extend or replace each and every pilot command in an easy way. In this
... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ix MaryAnn Foote Clinical trial registries and publication of results - a primer . . . . . . . . . . . . . . . . . . 1 Ana Marušić and Charlotte Haug The journal...
Mandavia, Rishi; Knight, Alec; Phillips, John; Mossialos, Elias; Littlejohns, Peter; Schilder, Anne
The regulation of surgical implants is vital to patient safety, and there is an international drive to establish registries for all implants. Hearing loss is an area of unmet need, and industry is targeting this field with a growing range of surgically implanted hearing devices. Currently, there is no comprehensive UK registry capturing data on these devices; in its absence, it is difficult to monitor safety, practices and effectiveness. A solution is developing a national registry of all auditory implants. However, developing and maintaining a registry faces considerable challenges. In this systematic review, we aimed to identify the essential features of a successful surgical registry. A systematic literature review was performed adhering to Preferred Reporting Items for Systematic Review and Meta-Analysis recommendations. A comprehensive search of the Medline and Embase databases was conducted in November 2016 using the Ovid Portal. Inclusion criteria were: publications describing the design, development, critical analysis or current status of a national surgical registry. All registry names identified in the screening process were noted and searched in the grey literature. Available national registry reports were reviewed from registry websites. Data were extracted using a data extraction table developed by thematic analysis. Extracted data were synthesised into a structured narrative. Sixty-nine publications were included. The fundamentals to successful registry development include: steering committee to lead and oversee the registry; clear registry objectives; planning for initial and long-term funding; strategic national collaborations among key stakeholders; dedicated registry management team; consensus meetings to agree registry dataset; established data processing systems; anticipating challenges; and implementing strategies to increase data completion. Patient involvement and awareness of legal factors should occur throughout the development process
Full Text Available The contribution is interested in activities in land registry at the Institute of Geodesy, Faculty of Civil Engineering in Brno University of Technology. Activities are based on teaching about land registry in bachelor´s and magister´s study programmes. Since 1986 VUT has named (judicial authorized expert in Geodesy and Cartography and in Civil Engineering. It means also an expert activity in the land registry. In the contribution there are several problems, which we can meet in lawsuit, then how we can use all of available materials, etc. The institute of Geodesy is interested also in delicate topics in land registry in thesis.
Full Text Available Introduction: The agricultural airplane pilot are daily exposed to intense noises, being susceptible to the noise-induced hearing loss (NIHL and its auditory and extra auditory effects. Objective: To analyze the audiological profile of this population, verifying the work's influence on its hearing. Method: It was realized a retrospective, individual, observational, and cross-sectional study through the data obtained by means of a questionnaire and audiometric thresholds of 41 agricultural pilots. To the statistical analysis were utilized the chi-square, Spearman, and Wilcoxon tests with significance level of 5%. Results: It was verified that 95,1% of the pilots use PPE ( personal protective equipment during flight and 58,5% have contact with pesticides. More than half of individuals referred to feel auditory and extra auditory symptoms, being the buzz the more frequent (29,1%. It has the occurrence of 29,3% of NIHL suggestive hearing loss and 68,3% of normality, taking this presence of unilateral notch in 24,4% and bilateral notch in 31,7%. It was found correlation statistically significant in the associations between time of service and the average of the acute frequencies in the right ear (p=0038, and in the left ear (p=0,010. It has a statistical tendency in the association between audiometric configuration and contact with pesticides (p=0,088. Conclusion: The hearing loss prevalence in this study was showed high. More than half of the sample has normal audiometric thresholds with notch configuration. Such data lead to the conclusion that the agricultural pilots, even with PPE use, they still suffer with the damages caused by noise, needing best proposals of hearing loss prevention.
Pamela Pape-Lindstrom; Tom Jack; Kathy Miller; Karen Aguirre; Judy Awong-Taylor; Teri Balser; Loretta Brancaccio-Taras; Kate Marley; Marcy Osgood; Marcy Peteroy-Kelly; Sandra Romano
The pilot certification process is an ambitious, nationwide endeavor designed to motivate important changes in life sciences education that are in line with the recommendations of the 2011 Vision and Change Report: A Call to Action (American Association for the Advancement of Science [AAAS], 2011). It is the goal of the certification process to acknowledge departments that have progressed towards full implementation of the tenets of Vision and Change and to motivate departments that have not...
Kessler, J T; Melloh, M; Zweig, Thomas; Aghayev, E; Röder, C
Spine Tango is the first and only International Spine Registry in operation to date. So far, only surgical spinal interventions have been recorded and no comparable structured and comprehensive documentation instrument for conservative treatments of spinal disorders is available. This study reports on the development of a documentation instrument for the conservative treatment of spinal disorders by using the Delphi consensus method. It was conducted with a group of international experts in the field. We also assessed the usability of this new assessment tool with a prospective feasibility study on 97 outpatients and inpatients with low back or neck pain undergoing conservative treatment. The new 'Spine Tango conservative' questionnaire proved useful and suitable for the documentation of pathologies, conservative treatments and outcomes of patients with low back or neck problems. A follow-up questionnaire seemed less important in the predominantly outpatient setting. In the feasibility study, between 43 and 63% of patients reached the minimal clinically important difference in pain relief and Core Outcome Measures Index at 3 months after therapy; 87% of patients with back pain and 85% with neck pain were satisfied with the received treatment. With 'Spine Tango conservative' a first step has been taken to develop and implement a complementary system for documentation and evaluation of non-surgical spinal interventions and outcomes within the framework of the International Spine Registry. It proved useful and feasible in a first pilot study, but it will take the experience of many more cases and therapists to develop a version similarly mature as the surgical instruments of Spine Tango.
Rodriguez, P; Belcaro, G; Dugall, M; Hu, S; Luzzi, R; Ledda, A; Ippolito, E; Corsi, M; Ricci, A; Feragalli, B; Cornelli, U; Gizzi, C; Hosoi, M
The aim of this study was to use Pycnogenol® to reduce the recurrence of retinal vein thrombosis (RVT) after a first episode. Pycnogenol® is an anti-inflammatory, anti-edema and an antiplatelet agent with a "mild" antithrombotic activity. The registry, using Pycnogenol® was aimed at reducing the number of repeated episodes of RVT. Possible management options--chosen by patients--were: standard management; standard management + oral Aspirin® 100 mg once/day (if there were no tolerability problems before admission); standard management + Pycnogenol® two 50 mg capsules per day (for a total of 100 mg/day). Number of subjects, age, sex, distribution, percentage of smokers, and vision were comparable. Recurrent RVT was seen in 17.39% of controls and in 3.56% of subjects supplemented with Pycnogenol® (PPycnogenol® supplementation in comparison with Aspirin®. Vision level was better with Pycnogenol® (20/25 at nine months; PPycnogenol®, edema at the retinal level was also significantly reduced compared to the other groups. Pycnogenol® has a very good safety profile. In the Aspirin® group 26 completed 9 months and 6 subjects dropped out for tolerability problems. In the Aspirin® group, 2 minor, subclinical, retinal, hemorrhagic episodes during the follow-up were observed (2 subjects out of 26, equivalent to 7.69%). This pilot registry indicates that Pycnogenol® seems to reduce the recurrence of RVT without side effects. It does not induce new hemorrhagic episodes that may be theoretically linked to the use of Aspirin® (or other antiplatelets). Larger studies should be planned involving a wider range of conditions, diseases and risk factors associated to RVT and to its recurrence.
Mihalic, Sharon F; Elliott, Delbert S
There is a growing demand for evidence-based programs to promote healthy youth development, but this growth has been accompanied by confusion related to varying definitions of evidence-based and mixed messages regarding which programs can claim this designation. The registries that identify evidence-based programs, while intended to help users sift through the findings and claims regarding programs, has oftentimes led to more confusion with their differing standards and program ratings. The advantages of using evidence-based programs and the importance of adopting a high standard of evidence, especially when taking programs to scale,are described. One evidence-based registry is highlighted--Blueprints for Healthy Youth Development hosted at the University of Colorado Boulder. Unlike any previous initiative of its kind, Blueprints established unmatched standards for identifying evidence-based programs and has acted in a way similar to the FDA--evaluating evidence, data and research to determine which programs meet their high standard of proven efficacy. Published by Elsevier Ltd.
Pedrajas, J M; Garmendia, C; Portillo, J; Gabriel, F; Mainez, C; Yera, C; Monreal, M
The Computerized Registry of Patients with Venous Thromboembolism (RIETE) is a prospective registry that consecutively includes patients diagnosed with venous thromboembolism. We compared the clinical presentation and response to anticoagulant treatment in patients with idiopathic venous thromboembolism (IVT) versus secondary venous thromboembolism (SVT, associated with a risk factor). We analyzed the differences in clinical characteristics, comorbidity, treatment and events during the first 3months after the diagnosis of venous thromboembolism in patients with IVT or SVT and according to their initial clinical presentation. A total of 39,921 patients with IVT (n=18,029; 45.1%) or SVT (n=21,892; 54.9%) were enrolled. The patients with IVT had a greater history of venous thromboembolism than those diagnosed with SVT (pSVT group (pSVT group than in the IVT group. At 90days, bleeding, death and the recurrence of venous thromboembolism were significantly more frequent in the SVT group. The multivariate analysis confirmed that IVT was associated with fewer major (OR, 0.60; 95%CI, 0.50-0.61; pSVT at 90days of the diagnosis. Copyright © 2014 Elsevier España, S.L.U. All rights reserved.
Ribes, Josepa; Gálvez, Jordi; Melià, Angels; Clèries, Ramon; Messeguer, Xavier; Bosch, Francesc Xavier
To increase data reliability and reduce the costs associated with the HTR, the Catalan Institute of Oncology programmed the manual procedures of data collection from databases by means of a computer application (ASEDAT). ASEDAT detects the incident tumors of the registry from the databases of the pathology records (PR) and discharge records (DR) and selects the basic information from both databases. Data from the HTR data was collected for the period 1999-2000 by means of 2 procedures: manual and automatized collection and the results obtained were compared. 10,498 cancer patients were detected. Manual resolution detected 8,309 incident tumors and 2,374 prevalent tumors. ASEDAT automatically detected 8,901 patients (84.8%), in whom 8,367 incident tumors were detected (58 more tumors than the manual procedure). Validation of agreement was performed in the incident tumors detected by both methods (7,063 tumors). In 6,185 tumors (87.6%) the information agreed in all the variables. Of the discordant tumors, 692 (9.8%) were obtained by the RHT staff using manual resolution, and the remainder (186; 2.6%) were obtained by the application (automatic resolution). Cancer registry automatization is feasible when PR and DR databases are available, coded and automatized.
Park, Yu Rang; Kim, Ju Han
Achieving data interoperability between organizations relies upon agreed meaning and representation (metadata) of data. For managing and registering metadata, many organizations have built metadata registries (MDRs) in various domains based on international standard for MDR framework, ISO/IEC 11179. Following this trend, two pubic MDRs in biomedical domain have been created, United States Health Information Knowledgebase (USHIK) and cancer Data Standards Registry and Repository (caDSR), from U.S. Department of Health & Human Services and National Cancer Institute (NCI), respectively. Most MDRs are implemented with indiscriminate extending for satisfying organization-specific needs and solving semantic and structural limitation of ISO/IEC 11179. As a result it is difficult to address interoperability among multiple MDRs. In this paper, we propose an integrated metadata object model for achieving interoperability among multiple MDRs. To evaluate this model, we developed an XML Schema Definition (XSD)-based metadata exchange format. We created an XSD-based metadata exporter, supporting both the integrated metadata object model and organization-specific MDR formats.
Levinsen, Karin; Meyer, Bente
The aim of the Lancelot pilot evaluation process was to understand how teachers learn to teach and to relate to the online environment through the specific context of the Lancelot live online course. Following the Action Research in the autumn of 2006 the LANCELOT live online language course...... was revised for the piloting in the spring of 2007. A second aim of the pilot evaluation has therefore been to assess the revision of the course following the Action Research....
Glenn, Beth A; Bastani, Roshan; Chang, L Cindy; Khanna, Rachna; Chen, Katherine
The goal of this pilot study was to assess sun protection practices and correlates among children with a family history of melanoma, a high risk and understudied group. Sixty-eight melanoma cases, recruited through the Los Angeles County cancer registry, completed a survey. Survivors provided data on 110 children (mean age = 8.11 years). Although most children used sunscreen (79 %), half experienced a recent sunburn. The mean sun protection level for the sample was similar to levels observed among average risk children. Efforts to reduce sunburn frequency and improve sun protection among these vulnerable children appear warranted.
Full Text Available Background: Breast cancer is the most common female cancer worldwide. Survival rate of breast cancer, especially as an indicator of the successful implementation of screening, diagnosis and treatment programs, has been at the center of attention of public health experts Material and Methods: In a survival study, the records of breast cancer cases in cancer registry system of Bushehr Province were extracted during 2001, March to 2013, September. These records were linked and matched with records of death registry system. After determining patients, status regarding being alive or dead, survival analysis was done. Life table, Kaplan-Mayer analysis, log rank and Breslow tests were used for computing and comparing survival rates. Results: In 300 recorded breast cancer cases, mean and standard deviation of age was 51.26±13.87. Survival rates were 95, 88, 78, 73 and 68 percent since the first year through the fifth year, respectively. Mean survival was 87.20 months (95% CI= 81.28- 93.12. There was no significant difference in mean survival regarding age and different geographical areas. Conclusion: Although survival rates of registered breast cancer patients in Bushehr Province are similar to other provinces, they are far from those of developed countries. This situation demands more extensive efforts regarding public education and improving the process of diagnosis, treatment and care of patients especially during first two years after diagnosis.
Mukul Chandra Kapoor
Conclusions: The RISE registry data suggest that desflurane-based anesthesia provides early recovery with stable hemodynamics without any airway adverse events, in a wide variety of surgical procedures.
Michel, Patrik; Odier, Céline; Rutgers, Matthieu; Reichhart, Marc; Maeder, Philippe; Meuli, Reto; Wintermark, Max; Maghraoui, Ali; Faouzi, Mohamed; Croquelois, Alexandre; Ntaios, George
.... The Acute STroke Registry and Analysis of Lausanne (ASTRAL) prospectively collects epidemiological, clinical, laboratory and multimodal brain imaging data of acute ischemic stroke patients in the Centre Hospitalier Universitaire Vaudois (CHUV...
... Administration 14 CFR Part 141 RIN 2120-AI86 Pilot, Flight Instructor, and Pilot School Certification AGENCY... Register on August 21, 2009. That final rule revised the training, qualification, certification, and... Certification and Training Branch, AFS-810, General Aviation and Commercial Division, Flight Standards Service...
Sandagdorj, Tuvshingerel; Sanjaajamts, Erdenechimeg; Tudev, Undarmaa; Oyunchimeg, Dondov; Ochir, Chimedsuren; Roder, David
The National Cancer Registry of Mongolia began as a hospital-based registry in the early 1960s but then evolved to have a population-wide role. The Registry provides the only cancer data available from Mongolia for international comparison. The descriptive data presented in this report are the first to be submitted on cancer incidence in Mongolia to a peer-reviewed journal. The purpose was to describe cancer incidence and mortality for all invasive cancers collectively, individual primary sites, and particularly leading sites, and consider cancer control opportunities. This study includes data on new cancer cases registered in Mongolia in 2003-2007. Incidence and mortality rates were calculated as mean annual numbers per 100,000 residents. Age-standardized incidence (ASR) and age-standardized mortality (ASMR) rates were calculated from age-specific rates by weighting directly to the World Population standard. Between 2003 and 2007, 17,271 new cases of invasive cancer were recorded (52.2% in males, 47.7% in females). The five leading primary sites in males were liver, stomach, lung, esophagus, and colon/rectum; whereas in females they were liver, cervix, stomach, esophagus and breast. ASRs were lower in females than males for cancers of the liver at 63.0 and 99.1 per 100,000 respectively; cancers of the stomach at 19.1 and 42.1 per 100,000 respectively; and cancers of the lung at 8.3 and 33.2 per 100,000 respectively. Liver cancer was the most common cause of death in each gender, the ASMR being lower for females than males at 60.6 compared with 94.8 per 100,000. In females the next most common sites of cancer death were the stomach and esophagus, whereas in males, they were the stomach and lung. Available data indicate that ASRs of all cancers collectively have increased over the last 20 years. Rates are highest for liver cancer, at about four times the world average. The most common cancers are those with a primary site of liver, stomach and esophagus, for which
Houser, Shannon H; Colquitt, Shannon; Clements, Kay; Hart-Hester, Susan
As the use of information technology within the healthcare setting increases, the impact of bridging registry data with electronic health records (EHRs) must be addressed. Current EHR implementation may create benefits as well as challenges to cancer registries in areas such as policies and regulations, data quality, reporting, management, staffing, and training. The purpose of this study was to assess 1) the status of EHR usage in cancer registries, 2) the impact of EHR usage on cancer registries, and 3) the benefits and challenges of EHR usage for cancer registries in Alabama. The study method consisted of a voluntary survey provided to participants at the Alabama Cancer Registry Association 2009 annual conference. Forty-three respondents completed the survey. Data indicated that the major benefits of EHR use for the cancer registry included more complete treatment information available to clinicians and researchers, more time for retrieving and analyzing data for clinicians and researchers, and better tracking of patient follow-up. The major challenges included lack of adequate resources, lack of medical staff support, and changing data standards. The conclusion of the study indicates that understanding the impacts and challenges of EHR usage within cancer registries has implications for public health data management, data reporting, and policy issues.
Allen, Larry A.; Rogers, Joseph G.; Warnica, J. Wayne; DiSalvo, Thomas G.; Tasissa, Gudaye; Binanay, Cynthia; O’Connor, Christopher M.; Califf, Robert M.; Leier, Carl V.; Shah, Monica R.; Stevenson, Lynne W.
Background In ESCAPE, there was no difference in days alive and out of the hospital for patients with decompensated heart failure (HF) randomly assigned to therapy guided by pulmonary artery catheter (PAC) plus clinical assessment versus clinical assessment alone. The external validity of these findings is debated. Methods and Results ESCAPE sites enrolled 439 patients receiving PAC without randomization in a prospective registry. Baseline characteristics, pertinent trial exclusion criteria, reasons for PAC use, hemodynamics, and complications were collected. Survival was determined from the National Death Index and the Alberta Registry. On average, registry patients had lower blood pressure, worse renal function, less neurohormonal antagonist therapy, and higher use of intravenous inotropes as compared with trial patients. Although clinical assessment anticipated less volume overload and greater hypoperfusion among the registry population, measured filling pressures were similarly elevated in the registry and trial, while measured perfusion was slightly higher among registry patients. Registry patients had longer hospitalization (13 vs. 6 days, p <0.001) and higher 6-month mortality (34% vs. 20%, p < 0.001) than trial patients. Conclusions The decision to use PAC without randomization identified a population with higher disease severity and risk of mortality. This prospective registry highlights the complex context of patient selection for randomized trials. PMID:18926438
Kovalenko, Anton A.; Brenn, Tormod; Odland, Jon Øyvind; Nieboer, Evert; Krettek, Alexandra; Anda, Erik Eik
ABSTRACT The objective was to assess the prevalence of selected major birth defects, based on data from two medical registries in Murmansk County, and compare the observed rates with those available for Norway and Arkhangelsk County, Northwest Russia. It included all newborns (≥22 completed weeks of gestation) registered in the Murmansk County Birth Registry (MCBR) and born between 1 January 2006 and 31 December 2009 (n=35,417). The infants were followed-up post-partum for 2 years through direct linkage to the Murmansk Regional Congenital Defects Registry (MRCDR). Birth defects identified and confirmed in both registries constituted the “cases” and corresponded to one or more of the 21 birth defect types reportable to health authorities in Moscow. The overall prevalence of major birth defects recorded in the MRCDR was 50/10,000 before linkage and 77/10,000 after linkage with the MCBR. Routine under-reporting to the MRCDR of 40% cases was evident. This study demonstrates that birth registry data improved case ascertainment and official prevalence assessments and reduced the potential of under-reporting by physicians. The direct linkage of the two registries revealed that hypospadias cases were the most prevalent among the major birth defects in Murmansk County. A bbreviations: ICD-10, International Classification of Diseases, 10th revision; MCBR, Murmansk County Birth Registry; MRCDR, Murmansk Regional Congenital Defects Registry; MGC, Murmansk Genetics Center PMID:28853333
Outcome prediction models play an invaluable role in the evaluation and improvement of modern trauma care. Trauma registries underlying these outcome prediction models need to be accurate, complete and consistent. This thesis focused on the opportunities and limitations of trauma registries and
Pollard, Cecil; Bailey, Kelly A.; Petitte, Trisha; Baus, Adam; Swim, Mary; Hendryx, Michael
Context: Diabetes care is challenging in rural areas. Research has shown that the utilization of electronic patient registries improves care; however, improvements generally have been described in combination with other ongoing interventions. The level of basic registry utilization sufficient for positive change is unknown. Purpose: The goal of…
Zomer, A. Carla; Uiterwaal, Cuno S. P. M.; van der Velde, Enno T.; Tijssen, Jan G. P.; Mariman, Edwin C. M.; Verheugt, Carianne L.; Vaartjes, Ilonca; Pieper, Petronella G.; Meijboom, Folkert J.; Grobbee, Diederick E.; Mulder, Barbara J. M.
Background: Statistics on cause-specific mortality are important for prognostic research. The aim of this study was to assess the utility of the national mortality registry in research on causes of death in adult patients with congenital heart disease (CHD). Methods: The CONCOR registry of over
Pippias, Maria; Stel, Vianda S.; Abad Diez, José Maria; Afentakis, Nikolaos; Herrero-Calvo, Jose Antonio; Arias, Manuel; Tomilina, Natalia; Bouzas Caamaño, Encarnación; Buturovic-Ponikvar, Jadranka; Čala, Svjetlana; Caskey, Fergus J.; Castro de la Nuez, Pablo; Cernevskis, Harijs; Collart, Frederic; Alonso de la Torre, Ramón; García Bazaga, Maria de Los Ángeles; de Meester, Johan; Díaz, Joan Manuel; Djukanovic, Ljubica; Ferrer Alamar, Manuel; Finne, Patrik; Garneata, Liliana; Golan, Eliezer; González Fernández, Raquel; Gutiérrez Avila, Gonzalo; Heaf, James; Hoitsma, Andries; Kantaria, Nino; Kolesnyk, Mykola; Kramar, Reinhard; Kramer, Anneke; Lassalle, Mathilde; Leivestad, Torbjørn; Lopot, Frantisek; Macário, Fernando; Magaz, Angela; Martín-Escobar, Eduardo; Metcalfe, Wendy; Noordzij, Marlies; Palsson, Runolfur; Pechter, Ülle; Prütz, Karl G.; Ratkovic, Marina; Resić, Halima; Rutkowski, Boleslaw; Santiuste de Pablos, Carmen; Spustová, Viera; Süleymanlar, Gültekin; van Stralen, Karlijn; Thereska, Nestor; Wanner, Christoph; Jager, Kitty J.
This article summarizes the 2012 European Renal Association-European Dialysis and Transplant Association Registry Annual Report (available at www.era-edta-reg.org) with a specific focus on older patients (defined as ≥65 years). Data provided by 45 national or regional renal registries in 30
Noordzij, Marlies; Kramer, Anneke; Abad Diez, José M.; Alonso de la Torre, Ramón; Arcos Fuster, Emma; Bikbov, Boris T.; Bonthuis, Marjolein; Bouzas Caamaño, Encarnación; Čala, Svetlana; Caskey, Fergus J.; Castro de la Nuez, Pablo; Cernevskis, Harijs; Collart, Frederic; Díaz Tejeiro, Rafael; Djukanovic, Ljubica; Ferrer-Alamar, Manuel; Finne, Patrik; García Bazaga, María de Los Angelos; Garneata, Liliana; Golan, Eliezer; Gonzalez Fernández, Raquel; Heaf, James G.; Hoitsma, Andries; Ioannidis, George A.; Kolesnyk, Mykola; Kramar, Reinhard; Lasalle, Mathilde; Leivestad, Torbjørn; Lopot, Frantisek; van de Luijtgaarden, Moniek W. M.; Macário, Fernando; Magaz, Ángela; Martín Escobar, Eduardo; de Meester, Johan; Metcalfe, Wendy; Ots-Rosenberg, Mai; Palsson, Runolfur; Piñera, Celestino; Pippias, Maria; Prütz, Karl G.; Ratkovic, Marina; Resić, Halima; Rodríguez Hernández, Aurelio; Rutkowski, Boleslaw; Spustová, Viera; Stel, Vianda S.; Stojceva-Taneva, Olivera; Süleymanlar, Gültekin; Wanner, Christoph; Jager, Kitty J.
This article provides a summary of the 2011 ERA-EDTA Registry Annual Report (available at www.era-edta-reg.org). Data on renal replacement therapy (RRT) for end-stage renal disease (ESRD) from national and regional renal registries in 30 countries in Europe and bordering the Mediterranean Sea were
Reid, Susan M.; Carlin, John B.; Reddihough, Dinah S.
This study used data from a population-based cerebral palsy (CP) registry and systematic review to assess the amount of heterogeneity between registries in topographical patterns when dichotomised into unilateral (USCP) and bilateral spastic CP (BSCP), and whether the terms diplegia and quadriplegia provide useful additional epidemiological…
... HUMAN SERVICES Food and Drug Administration Draft Guidance for Industry: Questions and Answers Regarding the Reportable Food Registry as Established by the Food and Drug Administration Amendments Act of 2007... information to the industry in complying with the Reportable Food Registry requirements prescribed by the Food...
Background: Trauma remains a significant cause of morbidity and mortality globally. Trauma registries are a key component of trauma systems in developed countries which have promoted improvement of patient care and outcomes. The experience with trauma registries in low income countries is limited. The current study ...
Couchoud, Cécile; Lassalle, Mathilde; Cornet, Ronald; Jager, Kitty J.
Registries in the area of renal replacement therapy (RRT) are intended to be a tool for epidemiological research, health care planning and improvement of quality of care. In this perspective, the value of a population-based RRT registry and its ability to achieve its goals rely heavily on the
... 16 Commercial Practices 1 2010-01-01 2010-01-01 false Fee for access to the National Do Not Call Registry. 310.8 Section 310.8 Commercial Practices FEDERAL TRADE COMMISSION REGULATIONS UNDER SPECIFIC ACTS OF CONGRESS TELEMARKETING SALES RULE § 310.8 Fee for access to the National Do Not Call Registry. (a...
Full Text Available Abstract Background A trauma registry is an integral component of modern comprehensive trauma care systems. Trauma registries have not been established in most developing countries, and where they exist are often rudimentary and incomplete. This review describes the role of trauma registries in the care of the injured, and discusses how lessons from developed countries can be applied toward their design and implementation in developing countries. Methods A detailed review of English-language articles on trauma registry was performed using MEDLINE and CINAHL. In addition, relevant articles from non-indexed journals were identified with Google Scholar. Results The history and development of trauma registries and their role in modern trauma care are discussed. Drawing from past and current experience, guidelines for the design and implementation of trauma registries are given, with emphasis on technical and logistic factors peculiar to developing countries. Conclusion Improvement in trauma care depends on the establishment of functioning trauma care systems, of which a trauma registry is a crucial component. Hospitals and governments in developing countries should be encouraged to establish trauma registries using proven cost-effective strategies.
Ploos van Amstel, Sophie; Noordzij, Marlies; Warady, Bradley A.; Cano, Francisco; Craig, Jonathan C.; Groothoff, Jaap W.; Ishikura, Kenji; Neu, Alicia; Safouh, Hesham; Xu, Hong; Jager, Kitty J.; Schaefer, Franz
To describe the factors affecting the incidence of renal replacement therapy (RRT) among children, information from RRT registries is required. We aimed to give an overview of existing pediatric RRT registries worldwide, identify regions with a need to commence or increase data collection on
Hommel, Kristine; Rasmussen, Søren; Madsen, Mette
The Danish National Registry on Regular Dialysis and Transplantation (NRDT) provides systematic information on the epidemiology and treatment of end-stage chronic kidney disease in Denmark. It is therefore of major importance that the registry is valid and complete. The aim of the present study w...... was to evaluate the registration of incident patients on chronic renal replacement therapy (RRT)....
Paxton, Elizabeth W.; Inacio, Maria CS; Kiley, Mary-Lou
Introduction: Considering the high cost, volume, and patient safety issues associated with medical devices, monitoring of medical device performance is critical to ensure patient safety and quality of care. The purpose of this article is to describe the Kaiser Permanente (KP) implant registries and to highlight the benefits of these implant registries on patient safety, quality, cost effectiveness, and research.
... motor vehicle drivers to undergo training, pass a certification exam, and be listed on the National... Federal Motor Carrier Safety Administration National Registry of Certified Medical Examiners Testing... Transportation (DOT). ACTION: Notice of Public Meeting. SUMMARY: The National Registry of Certified Medical...
Knapp, R.M.; McInerney, M.J.; Menzie, D.E.; Chisholm, J.L.
The objective of this project is to perform a microbial enhanced oil recovery field pilot in the Southeast Vassar Vertz Sand Unit (SEVVSU) in Payne County, Oklahoma. Indigenous, anaerobic, nitrate reducing bacteria will be stimulated to selectively plug flow paths which have been referentially swept by a prior waterflood. This will force future flood water to invade bypassed regions of the reservoir and increase sweep efficiency. This report covers progress made during the second year, January 1, 1990 to December 31, 1990, of the Microbial Field Pilot Study project. Information on reservoir ecology, surface facilities design, operation of the unit, core experiments, modeling of microbial processes, and reservoir characterization and simulation are presented in the report. To better understand the ecology of the target reservoir, additional analyses of the fluids which support bacteriological growth and the microbiology of the reservoir were performed. The results of the produced and injected water analysis show increasing sulfide concentrations with respect to time. In March of 1990 Mesa Limited Partnership sold their interest in the SEVVSU to Sullivan and Company. In April, Sullivan and Company assumed operation of the field. The facilities for the field operation of the pilot were refined and implementation was begun. Core flood experiments conducted during the last year were used to help define possible mechanisms involved in microbial enhanced oil recovery. The experiments were performed at SEVVSU temperature using fluids and inoculum from the unit. The model described in last year's report was further validated using results from a core flood experiment. The model was able to simulate the results of one of the core flood experiments with good quality.
Knapp, R.M.; McInerney, M.J.; Menzie, D.E.; Chisholm, J.L.
The objective of this project is to perform a microbial enhanced oil recovery field pilot in the Southeast Vassar Vertz Sand Unit (SEVVSU) in Payne County, Oklahoma. Indigenous, anaerobic, nitrate reducing bacteria will be stimulated to selectively plug flow paths which have been referentially swept by a prior waterflood. This will force future flood water to invade bypassed regions of the reservoir and increase sweep efficiency. This report covers progress made during the second year, January 1, 1990 to December 31, 1990, of the Microbial Field Pilot Study project. Information on reservoir ecology, surface facilities design, operation of the unit, core experiments, modeling of microbial processes, and reservoir characterization and simulation are presented in the report. To better understand the ecology of the target reservoir, additional analyses of the fluids which support bacteriological growth and the microbiology of the reservoir were performed. The results of the produced and injected water analysis show increasing sulfide concentrations with respect to time. In March of 1990 Mesa Limited Partnership sold their interest in the SEVVSU to Sullivan and Company. In April, Sullivan and Company assumed operation of the field. The facilities for the field operation of the pilot were refined and implementation was begun. Core flood experiments conducted during the last year were used to help define possible mechanisms involved in microbial enhanced oil recovery. The experiments were performed at SEVVSU temperature using fluids and inoculum from the unit. The model described in last year`s report was further validated using results from a core flood experiment. The model was able to simulate the results of one of the core flood experiments with good quality.
Thomsen, SF; Ulrik, Charlotte Suppli; Kyvik, KO
OBJECTIVE: To estimate to what extent the same genetic and environmental risk factors influence asthma, hay fever and eczema. DESIGN: From the nationwide Danish Twin Registry, twin cohorts born between 1953 and 1982 were contacted for a questionnaire survey, and a total of 29 183 twin individuals...... (86%) responded. Subjects were classified as cases when responding affirmatively to three questions about the lifetime occurrence of asthma, hay fever and eczema. Variance components twin analysis was conducted using maximum likelihood methods. RESULTS: The phenotypic (within-subject) correlations...... in liability between the different diseases were 0.57 (95% CI 0.54-0.59) for asthma and hay fever, 0.40 (95% CI 0.36-0.42) for asthma and eczema, and 0.33 (95% CI 0.29-0.36) for hay fever and eczema. Decomposition of these correlations into their genetic and environmental contributions showed that shared genes...
Marijon, Eloi; Bougouin, Wulfran; Jouven, Xavier
So far, sports-related sudden death has been mainly studied through young competitive athletes. The national sports-related sudden death French registry (2005-2010) is the first study evaluating sudden death during sports activities in the general population, estimating that approximately 1000 cases occur each year in France. The vast majority occurs among middle age men practicing recreational activities, with women presenting a very low risk (up to 30-fold lower) compared to men. Outcomes dramatically vary across districts with survival to hospital discharge from 0 to 50%. Those differences are mainly the result of major disparities between districts regarding cardiopulmonary resuscitation initiated by bystanders. Coronary artery disease remains the most frequent cardiovascular disease associated with such events.
Herzberg, Frederick I.; And Others
The study was an investigation of student pilot motivation for, and toward, the Air Training Command's undergraduate pilot training (UPT) program. The motivation hygiene approach was used to identify the motivational factors operating in the UPT program systematically. This approach has been used extensively in industry and with success in a…
visual display system. It is mounted on a motion platform having two degrees of freedom and is able to provide vestibular and kinesthetic pilot cueing...I. . . . . .. . APPENDIX C-I MANEUVERS BRIEFING (TRAINING/SCREENING OF PILOTS) NORMAL TAKEOFF At Vr , rotate to 100 - 120. When a positive rate of
Gómez, M P; Arredondo, E; Páez, G; Manyalich, M
The International Registry in Organ Donation and Transplantation (IRODaT) seeks to support the transplant community by providing up-to-date data on organ donation and transplantation worldwide at three different levels: national, regional, and Hospital. The database provides up-to-date information provided by a network of professionals directly involved in the various stages of the donation and transplantation process. All collected data are made public online, so professionals can use them as descriptive and epidemiological references. The registry provides numbers on donors after brain death, donors after cardiac death, and living donors, as well as on specific organ transplantation activities related to the three types of organ donation. A subregistry on tissue and cell donation has been made available as well. All numbers are continuously checked, updated, and validated and, when needed, responsible representatives are contacted for the required statistics. Data on organ donation and transplantation from 2009 and 2010 have been collected from 63 countries. The information reveals a remarkable increase in the donation rate in some countries such as Croatia, Italy, Slovenia, Czech Republic, Germany, Hungary, Australia, Luxemburg, Poland, Brazil, Singapore, Iran, Saudi Arabia, Venezuela, Romania, Bulgaria, Mexico, Russia, and Argentina. IRODaT provides data concerning the organ donation and transplantation activities for the general public and professionals around the world. National and comparative statistics generated on an international basis can be provided that is of extreme value to scientific programs and social and governmental bodies because they can support different initiatives of current practices in organ and tissue donation in any country or region of the world. Copyright © 2012 Elsevier Inc. All rights reserved.
Álvarez, Miguel; Bertomeu-González, Vicente; Arcocha, M Fe; Moriña, Pablo; Tercedor, Luis; Ferrero de Loma, Ángel; Pachón, Marta; García, Amaya; Pardo, Mónica; Datino, Tomás; Alonso, Concepción; Osca, Joaquín
Nonfluoroscopic catheter ablation is feasible in most procedures. The aim of our registry was to evaluate the safety and feasibility of a zero-fluoroscopic approach to catheter ablation in several Spanish centers. Eleven centers prospectively included a minimum of 20 patients. Patients with an arrhythmic substrate deemed suitable by the operator for a zero-fluoroscopic approach throughout the procedure were recruited. Patients with intracardiac devices were not included. Attending electrophysiologists, fellows, and resident physicians participated in each procedure, as in usual care. The study included 247 patients. Ablation was performed in 235 patients (95.2%). In 2 patients, who were not included in the analysis, fluoroscopy was performed as the first-line treatment. The arrhythmic substrate was located in the right chambers in most of the procedures (231 of 233 [99.15%]). Fluoroscopy was used in 24 procedures (10.3%). Catheter ablation was successful in 96.4% of the procedures and severe complications occurred in 2 patients (0.85%). Two variables were related to the need for fluoroscopy: the performing center (minimum 0% vs maximum 30.3%; P=.001) and procedural failure (13% vs 2.4%; P<.05). The Spanish multicenter registry reveals that a zero-fluoroscopic approach is feasible in most right-sided catheter ablation procedures. Randomized trials are necessary to confirm the safety of this approach. The need for fluoroscopy was related to procedural failure, with significant differences among performing centers. Copyright © 2016 Sociedad Española de Cardiología. Published by Elsevier España, S.L.U. All rights reserved.
Aylward, Shawn C; Waslo, Carin S; Au, Johnathan N; Tanne, Emanuel
The purpose of this study was to examine the presenting symptoms, demographics, and interventions in pediatric patients enrolled in the Intracranial Hypertension Registry. We analyzed confirmed intracranial hypertension patients ≤18 years at the time of initial diagnosis who were enrolled in the registry. A total of 203 patients met the criteria for inclusion; 142 (70%) were considered primary intracranial hypertension. Females made up 72.5% (103 of 142) and 75.8% (47 of 61) in the primary intracranial hypertension and secondary intracranial hypertension groups, respectively. There were no clinically significant differences in age, body mass index, or opening pressure between the primary intracranial hypertension and secondary intracranial hypertension groups. Symptoms most often reported were headache and blurred vision. Bilateral optic disc edema occurred in 89.3% of primary intracranial hypertension and 78.7% of secondary intracranial hypertension patients. When divided into pre- and postpubertal status, 32.5% of patients were classified prepubertal; 77.3% of these had primary intracranial hypertension. This resulted in a female to male ratio of 1:1.04 for prepubertal and 6:1 for postpubertal primary intracranial hypertension patients. The body mass index was significantly higher in the postpubertal primary intracranial hypertension group (P = 0.0014). There was no significant difference in opening pressure. The common symptoms of intracranial hypertension, including headache, optic disc edema, and vision changes, occurred with similar frequencies in our cohort to those reported in the literature. In separate subanalyses, we found significantly higher rates of obesity in postpubertal females with primary intracranial hypertension. The female-to-male ratios in the postpubertal primary intracranial hypertension and secondary intracranial hypertension groups were higher than reported in the literature. Copyright © 2016 Elsevier Inc. All rights reserved.
Taye, Mulat; Munie, Tadios
A simplified trauma registry was tested in Tikur anbessa hospital, with the aim of obtaining preliminary data on the patterns and magnitude of injuries and establishing the basis towards surveillance system. All injured patients presented to the surgical and pediatric emergency department between January 1, 1999 and June 31, 1999 were included. Interns completed the registry forms, which include demographic, injury event specific, severity and outcome data. The severity was assessed by new scoring system, Kampla Trauma Score (KTS). Among the 3822 injured patients 2869(75%) were males and 953(25%) were females and 80% were below the age of 40 years. 77% of the injuries were unintentional and motor vehicle injuries accounted for 41% of all causes among which 93% of them were pedestrians. Accidental fall and interpersonal assault accounted for 21% and 20% respectively. Admitted cases were 11.6%, while 20 (.5%) died at the outpatient department with the overall mortality of 1.47%. Though burn and gunshot accounted only for 6%, the case fatality rate was highest (4%) accounting for 20% of all deaths. The magnitude of fatal injuries is underestimated and the pattern of injuries may only reflect the situation in the big cities. Motor vehicle injuries, especially pedestrian injuries are serious problem in Addis as seen in patients in Tikur Anbessa hospital and require further situational studies and urgent intervention. Establishing hospital based simplified injury surveillance system is possible in Ethiopia and it is essential to asses the magnitude of the problem and identify priority area for injury prevention and control.
Singh, Sheetu; Collins, Bridget F; Sharma, Bharat B; Joshi, Jyotsna M; Talwar, Deepak; Katiyar, Sandeep; Singh, Nishtha; Ho, Lawrence; Samaria, Jai Kumar; Bhattacharya, Parthasarathi; Gupta, Rakesh; Chaudhari, Sudhir; Singh, Tejraj; Moond, Vijay; Pipavath, Sudhakar; Ahuja, Jitesh; Chetambath, Ravindran; Ghoshal, Aloke G; Jain, Nirmal K; Devi, H J Gayathri; Kant, Surya; Koul, Parvaiz; Dhar, Raja; Swarnakar, Rajesh; Sharma, Surendra K; Roy, Dhrubajyoti J; Sarmah, Kripesh R; Jankharia, Bhavin; Schmidt, Rodney; Katiyar, Santosh K; Jindal, Arpita; Mangal, Daya K; Singh, Virendra; Raghu, Ganesh
Interstitial lung disease (ILD) is a heterogeneous group of acute and chronic inflammatory and fibrotic lung diseases. Existing ILD registries have had variable findings. Little is known about the clinical profile of ILDs in India. To characterize new-onset ILDs in India by creating a prospective ILD using multidisciplinary discussion (MDD) to validate diagnoses. Adult patients of Indian origin living in India with new-onset ILD (27 centers, 19 Indian cities, March 2012-June 2015) without malignancy or infection were included. All had connective tissue disease (CTD) serologies, spirometry, and high-resolution computed tomography chest. ILD pattern was defined by high-resolution computed tomography images. Three groups independently made diagnoses after review of clinical data including that from prompted case report forms: local site investigators, ILD experts at the National Data Coordinating Center (NDCC; Jaipur, India) with MDD, and experienced ILD experts at the Center for ILD (CILD; Seattle, WA) with MDD. Cohen's κ was used to assess reliability of interobserver agreement. A total of 1,084 patients were recruited. Final diagnosis: hypersensitivity pneumonitis in 47.3% (n = 513; exposure, 48.1% air coolers), CTD-ILD in 13.9%, and idiopathic pulmonary fibrosis in 13.7%. Cohen's κ: 0.351 site investigator/CILD, 0.519 site investigator/NDCC, and 0.618 NDCC/CILD. Hypersensitivity pneumonitis was the most common new-onset ILD in India, followed by CTD-ILD and idiopathic pulmonary fibrosis; diagnoses varied between site investigators and CILD experts, emphasizing the value of MDD in ILD diagnosis. Prompted case report forms including environmental exposures in prospective registries will likely provide further insight into the etiology and management of ILD worldwide.
Luengo Pérez, L M; Chicharro, M L; Cuerda, C; García Luna, P P; Rabassa Soler, A; Romero, A; Irles, J A; Penacho, M A; Camarero, E; Martínez Olmos, M A; Calañas, A; Parés, R M; Lecha, M; Gómez Candela, C; Zapata, A; Pérez de la Cruz, A; Luis, D de; Wanden-Berghe, C; Cantón, A; Laborda, L; Matía, P; Martí, E
To communicate the results from the registry of Home-Based Enteral Nutrition of the NADYASENPE group in 2007. We included every patient in the registry with home enteral nutrition any time from January 1st to December 31st of 2007. The number of patients with home enteral nutrition in 2007 was 5,107 (52% male) from 28 different hospitals. 95.4% of them were 15 yr or older, with a mean age of 67.96 +/- 18.12, and 4.2 +/- 3.38 among patients aged 14 yr or less. The most common underlying diseases were neurological (37.8%) and neoplastic diseases (29.3%). Enteral nutrition was administered p.o. in most patients (63.5%), followed by nasogastric tube (25.9%), while gastrostomy was only used in 9.2%. The mean time in enteral nutrition support was 9.4 months and the most common reasons for withdrawal were death (58.7%) and switching to oral intake (32%). Activity was limited in 31.4% of patients and 36.01% were house-bound. Most patients needed partial (26.51%) or total (37.68%) care assistance. Enteral formula was provided by hospitals to 69.14% of patients and by pharmacies to 30.17% of them, while disposable material was provided by hospitals to 81.63% and by Primary Care to the remaining patients. In 2007, there has been an increase of more than 30% of patients registered with home enteral nutrition comparing with 2006, without any big difference in other data, but a higher proportion of patients with enteral nutrition p.o.
Frías, L; Puiggròs, C; Calañas, A; Cuerda, C; García-Luna, P P; Camarero, E; Rabassa-Soler, A; Irles, J A; Martínez-Olmos, M A; Romero, A; Wanden-Berghe, C; Laborda, L; Vidal, A; Gómez-Candela, C; Penacho, M A; Pérez de la Cruz, A; Lecha, M; Luengo, L M; Suárez, P; de Luis, D; García, Y; Parés, R M; Garde, C
To describe the results of the home enteral nutrition (HEN) registry of the NADYA-SENPE group in 2010. We retrieved the data of the patients recorded from January 1st to December 31st 2010. We registered 6,591 patients (51% males) with 6,688 episodes of HEN, from 32 hospitals. Mean age in those younger than 14 yr (4%) was 1 ± 2 yrs (m ± SD) and 69,9 ± 17,8 yrs in those older than 14 yr. The length of HEN was longer than 2 yrs in 76% of the patients. The most frequent underlying disease was neurological disorders 42%, followed by cancer 28% (mostly head and neck cancer 18%). We had information related to the enteral access route in only 626 cases (9,4%), 51% of them used nasogastric tubes, 27% gastrostomies, 10% oral route and 3% jejunostomies. Only 251 episodes were closed during the year, mostly due to patient death 57% and progress to oral diet 14%. The activity level was limited in 29% of the patients and 39% of them were bed- or chairridden. Total or partial help was needed by 68% of the patients. The hospitals and the private pharmacies delivered the enteral formula in 63% and 34% of the cases, respectively. The hospitals and the primary care centres delivered the disposables in 83% and 16% of the cases, respectively. The results of the 2010 HEN registry are similar to those published in previous years regarding the number and characteristics of the patients. We continue finding problems in the entrance of data referred to the enteral access route and the closing of the episodes.
Aaberg, Kari Modalsli; Bakken, Inger Johanne; Lossius, Morten I; Lund Søraas, Camilla; Håberg, Siri Eldevik; Stoltenberg, Camilla; Surén, Pål; Chin, Richard
Children with epilepsy are at increased risk of other disorders and difficulties, preceding, cooccurring with, or after the diagnosis of epilepsy. Risk estimates vary, few studies are population-based, and few provide comprehensive assessments of comorbidities. We used nationwide registry data to describe frequencies of medical, neurologic, developmental, and psychiatric conditions occurring before and after children are diagnosed with childhood epilepsy. Data were obtained from the Norwegian Patient Registry, which is an administrative database recording International Classification of Diseases, 10th Revision diagnoses from all government-funded specialist health services in Norway (outpatient consultations and hospitalizations). We included data from the years 2008 through 2013 for all children born in Norway between 1996 and 2013 (0-17 years of age at the end of follow-up). Children with epilepsy were compared with the general child population, adjusting for sex and age. We also compared children with complicated epilepsies (ie, epilepsies with additional neurologic and/or developmental disorders) to children with uncomplicated epilepsies. The study population included 1 125 161 children. There were 6635 (0.6%) children with epilepsy. Nearly 80% of children with epilepsy had ≥1 comorbid disorder. All types of disorders were more frequent in children with epilepsy, with additional medical disorders recorded in 55%, neurologic disorders in 41%, and developmental/psychiatric disorders in 43%. Children with complicated epilepsies had the highest overall levels of comorbidity, but the risk of medical and psychiatric comorbidities was also substantial among children with uncomplicated epilepsies. The overall frequency of comorbid disease is high in children with epilepsy, including children with presumably uncomplicated epilepsies. Copyright © 2016 by the American Academy of Pediatrics.
Troelsen, Anders; Malchau, Erik; Sillesen, Nanna Hylleholt
and to analyze age-stratified risk of revision comparing cemented, hybrid, and uncemented fixation as reported by national hip arthroplasty registries. METHODS: Data were extracted from the annual reports of seven national hip arthroplasty registries; we included all national registries for which annual reports...... were available in English or a Scandinavian language, if the registry had a history of more than 5 years of data collection. RESULTS: Current use of uncemented fixation in primary THAs varies between 15% in Sweden and 82% in Canada. From 2006 to 2010 the registries of all countries reported overall...... increases in the use of uncemented fixation; Sweden reported the smallest absolute increase (from 10% to 15%), and Denmark reported the greatest absolute increase (from 47% to 68%). Looking only at the oldest age groups, use of uncemented fixation also was increasing during the period. In the oldest age...
Hurley, Donna S.; Sukal-Moulton, Theresa; Msall, Michael E.; Gaebler-Spira, Deborah; Krosschell, Kristin J.; Dewald, Julius P.
Cerebral palsy is the most common neurodevelopmental motor disability in children. The condition requires medical, educational, social, and rehabilitative resources throughout the life span. Several countries have developed population-based registries that serve the purpose of prospective longitudinal collection of etiologic, demographic, and functional severity. The United States has not created a comprehensive program to develop such a registry. Barriers have been large population size, poor interinstitution collaboration, and decentralized medical and social systems. The Cerebral Palsy Research Registry was created to fill the gap between population and clinical-based cerebral palsy registries and promote research in the field. This is accomplished by connecting persons with cerebral palsy, as well as their families, to a network of regional researchers. This article describes the development of an expandable cerebral palsy research registry, its current status, and the potential it has to affect families and persons with cerebral palsy in the United States and abroad. PMID:21677201
Full Text Available The article is devoted to the development of the methodology of measuring pilot performance under real flight conditions. It provides the basic information on a research project realized to obtain new information regarding training and education of pilots. The introduction is focused on the analytical part of the project and the outputs in terms of the current state of the art. Detailed view is cast on the issue of measuring pilot performance under specific conditions of the cockpit or the flight simulator. The article is zooming in on the two selected and developed methods of pilot performance in terms of the defined indicators evaluated, conditions of compliance for conducting research and procedures of the methodology of pilot performance measurements.
Full Text Available An important problem in the design of flight-control systems for aircraft under pilotedcontrol is the determination of handling qualities and pilot-induced oscillations (PIO tendencieswhen significant nonlinearities exist in the vehicle description. The paper presents a method to detectpossible pilot-induced oscillations of Category II (with rate and position limiting, a phenomenonusually due to a misadaptation between the pilot and the aircraft response during some tasks in whichtight closed loop control of the aircraft is required from the pilot. For the analysis of Pilot in the LoopOscillations an approach, based on robust stability analysis of a system subject to uncertainparameters, is proposed. In this analysis the nonlinear elements are substituted by linear uncertainparameters. This approach assumes that PIO are characterized by a limit cycle behavior.
Agarwal, Shikhar; Tuzcu, E. Murat; Stewart, William; Bajaj, Navkaranbir Singh; Svensson, Lars G.; Kapadia, Samir R.
Background TAVR has emerged as an attractive alternative for treatment of severe aortic stenosis in high risk surgical patients. Despite several large multicenter registries, only one randomized trial (PARTNER) has been published. Objective We aimed to compare the outcomes obtained using multicenter registries and the PARTNER trial. Methods Standard MEDLINE search strategy was used to find multicenter registries, reporting clinical outcomes following TAVR. Meta-analytic techniques were utilized to calculate pooled outcomes across multicenter registries and compare them to outcomes in PARTNER trial. Results Pooled 30-day mortality rate from the registries was 9.2%, which was significantly higher than that in the PARTNER trial (3.8%). Medium-term mortality rates were similar between the PARTNER trial and the multicenter registries. Pooled 30-day and 1-year stroke rates in multicenter registries were 2.6% and 3.8%, respectively. On the other hand, the corresponding rates in PARTNER trial were 5.2% and 7.6%, respectively. In the registry-related cohorts, pooled 30-day and 1-year mortality rates were 6.8% and 20.8% in the transfemoral group and 12.2% and 32.2% in the transapical group. In the PARTNER trial, the pooled incidence of 30-day and 1-year mortality rates were 3.9% and 26.2% in the transfemoral group and 3.8% and 29.0% in the transapical group. Conclusions Short-term results in PARTNER were better than those reported in the registries, which may be due to better patient selection and aggressive bailout techniques. Similarity of medium-term outcomes between registries and PARTNER highlights that patient selection for TAVR is critical due to considerable risk of mortality in the first year even after the successful procedure. PMID:23993001
The present report is a revised version of an earlier report (IFE/KR/E-96/008). The revision has been carried out since a completely new version of the computational tool has recently been released. All calculations have been redone. The work which is presented in this report is part of a Norwegian epidemiological project, carried out in cooperation between Institute for Energy Technology (IFE), the Norwegian Cancer Registry (NCR) and the Norwegian Radiation Protection Authority (NRPA). Originating from the Norwegian project, a number of similar projects have been started in a number of European countries. The present report lays the ground for estimation of individual exposure histories to cosmic radiation of pilots employed by the the Scandinavian Airlines System (SAS). The result presented in this report (radiation dose rates for the different types of aircraft in the different years) were calculated with the most recent computer program for this purpose, the CARI-5E from the United States Civil Aviation Authority. The other major sources of information used as basis for this work is the collection of old SAS time tables found the the SAS Museum at Fornebu Airport in Oslo, and information provided by members of the Pilots Association in Norway.
Full Text Available This paper presents current trends in service design research concerning large scale projects aimed at generating changes at a local scale. The strategy adopted to achieve this, is to co-design solutions including future users in the development process, prototyping and testing system of products and services before their actual implementation. On the basis of experience achieved in the European Project Life 2.0, this paper discusses which methods and competencies are applied in the development of these projects, eliciting the lessons learnt especially from the piloting phase in which the participatory design (PD approach plays a major role. In the first part, the topic is introduced jointly with the theoretical background where the user center design and participatory design methods are presented; then the Life 2.0 project development is described; finally the experience is discussed from a service design perspective, eliciting guidelines for piloting and prototyping services in a real context of use. The paper concludes reflecting on the designers’ role and competencies needed in this process.
Stagni, F; McNab, A; Luzzi, C
In the last few years, new types of computing infrastructures, such as IAAS (Infrastructure as a Service) and IAAC (Infrastructure as a Client), gained popularity. New resources may come as part of pledged resources, while others are opportunistic. Most of these new infrastructures are based on virtualization techniques. Meanwhile, some concepts, such as distributed queues, lost appeal, while still supporting a vast amount of resources. Virtual Organizations are therefore facing heterogeneity of the available resources and the use of an Interware software like DIRAC to hide the diversity of underlying resources has become essential. The DIRAC WMS is based on the concept of pilot jobs that was introduced back in 2004. A pilot is what creates the possibility to run jobs on a worker node. Within DIRAC, we developed a new generation of pilot jobs, that we dubbed Pilots 2.0. Pilots 2.0 are not tied to a specific infrastructure; rather they are generic, fully configurable and extendible pilots. A Pilot 2.0 can be s...
Kramer, Anneke; Stel, Vianda S.; Abad Diez, Jos? Maria; Alonso de la Torre, Ram?n; Bouzas Caama?o, Encarnaci?n; ?ala, Svjetlana; Cao Baduell, Higini; Castro de la Nuez, Pablo; Cernevskis, Harijs; Collart, Frederic; Couchoud, C?cile; de Meester, Johan; Djukanovic, Ljubica; Ferrer-Alamar, Manuel; Finne, Patrik
BACKGROUND: This study provides a summary of the 2010 European Renal Association-European Dialysis and Transplant Association (ERA-EDTA) Registry Annual Report (available at www.era-edta-reg.org). METHODS: This report includes data on renal replacement therapy (RRT) using data from the national and regional renal registries in 29 countries in Europe and bordering the Mediterranean Sea. Individual patient data were received from 27 registries, whereas 18 registries contributed data in aggregat...
Aksan, Gökhan; Soylu, Korhan; Demircan, Sabri; Aksoy, Olcay; Yanık, Ahmet; Gedikli, Ömer; Yüksel, Serkan; Şahin, Mahmut; Yılmaz, Özcan
The data on the successful use of oral anticoagulation (OAC) in patients with atrial fibrillation are inconclusive. We aimed to describe the indications and the utilization patterns of OAC therapy in patients with atrial fibrillation who have been admitted to a quaternary hospital. Patients who were admitted to a quaternary hospital from January 2011 to January 2012 with atrial fibrillation were included in the study. The data on patient demographics, atrial fibrillation classification, CHA2DS2VASc scores, and the use of OAC were collected. Of the patients admitted, 301 patients met the inclusion criteria. Of these, 277 (92%) had a CHA2DS2VASc score at least 2. Of the patients who met criteria for treatment with OAC, 104 (36.6%) were not on OAC therapy. The reason for this discrepancy was tendency and history of bleeding (29.8%). Of those 180 patients who were on OAC, the time in therapeutic range was higher in those patients less than 50 years as compared with those between ages 65-74 and more than 75 (78.2 versus 42 and 36.1%, P < 0.05). The overall time in therapeutic range of patients on OAC was 47.4%. We found that approximately one-third of the patients who have indications for OAC are not being treated as per guidelines due to history of and tendency for bleeding. Furthermore, of those on OAC, only half of the patients achieved successful anticoagulation.
... 14 Aeronautics and Space 2 2010-01-01 2010-01-01 false Military pilots or former military pilots: Special rules. 61.73 Section 61.73 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF... Ratings and Pilot Authorizations § 61.73 Military pilots or former military pilots: Special rules. (a...
... 33 Navigation and Navigable Waters 3 2010-07-01 2010-07-01 false Pilot projects. 385.12 Section... Processes § 385.12 Pilot projects. (a) The Plan includes pilot projects to address uncertainties associated... management, and wastewater reuse. The purpose of the pilot projects is to develop information necessary to...
Denton, Christopher P.; Krieg, Thomas; Guillevin, Loic; Schwierin, Barbara; Rosenberg, Daniel; Silkey, Mariabeth; Zultak, Maurice; Matucci-Cerinic, Marco; Stetter, M.; Lackner, K.; Tomi, N.; Hafner, F.; Brodmann, M.; Kuen-Spiegel, M.; Kolle, H.; Raffier, B.; Hamberger, N.; Metz, S.; Siebel, C.; Trummer, M.; Thonhofer, R.; Illmer, X.; Trautinger, F.; Schmidt, P.; Rintelen, B.; Sautner, J.; Willfort-Ehringer, A.; Margeta, C.; Monshi, B.; Pirkhammer, D.; Richter, L.; Holzer, G.; Minmair, G.; Broll, H.; Takacs, M.; Hirschl, M.; Mesaric, P.; Feldmann, R.; Semmelweis, K.; Hundstorfer, M.; Reinhart, V.; Maurer, B.; Verner, D.; Distler, O.; Schmidt-Bosshard, R.; Bohmova, J.; Prochazkova, L.; Nemec, P.; Fojtik, Z.; Soukup, T.; Smrzova, A.; Suchy, D.; Zemanova, I.; Becvar, R.; Gawlik, A.; Koch, M.; Rauen, T.; Voss, B.; Kurthen, R.; Unholzer, A.; Starz, H.; Welzel, J.; Plaumann, K.; Merk, B.; Bloching, H. H.; Moosig, F.; Frey, P.; Kahl, S.; Schleenbecker, H.; Storck-Mueller, K.; Schwarting, A.; Hazenbiller, A.; Nichelmann, V.; Flaig, W.; Rumbaur, C.; Boesenberg, I.; Schmeiser, T.; Marx, J.; Mayer, L.; Stein, T.; Ochs, W.; Rasche, C.; Worm, M.; Riemekasten, G.; Deuschle, K.; Becker, M.; Kleiner, H. J.; Schulze, K.; Tiggers, C.; Peters, J.; Kirschke, J.; Schaefer, C.; Monshausen, M.; Mengden, T.; Sadeghlar, F.; Seidel, M.; Hillebrecht, C.; Andresen, J.; Reemtsen, R.; Stoeckl, F.; Sperling, S.; Podda, M.; Wagner, N.; Guenzel, J.; Wuerzburg, I.; Luethke, K.; Enderlein, M.; Kayser, M.; Gerber, A.; Haust, M.; Hoff, N. P.; Mota, R.; Akanay-Diesel, S.; Jahnke, K.; Mettler, S.; Toeller, S.; Zwenger, S.; Klein, E.; Hahn, K.; Beyer, C.; Distler, J.; Katzemich, A.; Erfurt-berge, C.; Sticherling, M.; Schuch, F.; Rapp, P.; Mitchell, A.; Freundlieb, C.; Rushentsova, U.; Himsel, A.; Henkemeier, U.; Eilbacher, P.; Ullrich-Guenther, C.; Neul, S.; Oelsner, M.; Hermanns, G.; Fiene, M.; Gause, A.; Mensing, C.; Klings, D.; Mensing, H.; Messall, J.; Zuper, R.; May, D.; Bruckner, L.; Sheikh, N.; Aries, P.; Kirchberg, S.; Funkert, A.; Blank, N.; Lupaschko, S.; Schwuerzer-Voit, M.; Meier, L.; Herr, U.; Meier, U.; Neek, G.; Wernitzsch, H.; Pfoehler, C.; Assmann, G.; Vosswinkel, J.; Krog, B.; Wollersdorfer, E.; Oltmann-Schroeder, J.; Zeuner, R.; Uhlig, S.; Barth, S.; Huegel, R.; Glaeser, R.; Rabe, B.; Schuster, J.; Scholz, J.; Kremer, K.; Robakidze-Torbahn, M.; Moinzadeh, P.; Mittag, M.; Dohse, A.; Muhlack, A.; Schultz, L.; Schult, S.; Frambach, Y.; Kettenbach, A.; Fell, I.; Schweda, K.; Steinbrink, K.; Podobinska, M.; Harmuth, W.; Nielen, C.; Kaczmarczyk, A.; Kellner, C.; von Oelhafen, J.; von Bildering, P. B.; Kunze, S.; Niedermeier, A.; Messer, G.; Sardy, M.; Bekou, V.; Belloni, B.; Huettig, B.; Ziai, M.; Hein, R.; Hallecker, A.; Gaubitz, M.; Hallermann, C.; Schmidt, K.; Herrgott, I.; Hildebrandt, B.; Eiden, E.; Guertler, I.; Gernot Scheibl, E.; Brand, H.; Kaeding, U.; Weiss, E.; Reischel, N.; Kern, S.; Baumann, C.; Hellmich, B.; Loeffler, C.; Pflugfelder, J.; Karaenke, P.; Ruchenburg, J.; Blume, J.; Zabel, M.; Deppermann, N.; Chromik, S.; Metzler, C.; Krupp, E.; Rumpel, H.; Krause Rostock, J.-O.; Kneitz, C.; Federow, I.; Schneider, K.; Semmler, M.; Hapke, S.; Barnd, A.; Linke, M.; Kampe-Juzak, E.; Knoebel, K.; Niefanger, K.; Wilhelm, H. U.; Lauterwein, B.; Fierlbeck, G.; Schanz, S.; Pfeiffer, C.; Hassel, R.; Wahn, H.; Schildt, K.; von Elling, A.; Boro, D.; Ebel, J.; Ahmadi, K.; Moritz, D.; Dietl, S.; Dyballa, J.; Alsheimer, B.; Schuetz, N.; Schuart, T.; Mueglich, C.; Tony, H. P.; Marina, P.; Deininger, F.; Hartmann, F.; Olsen, A. B.; Sondergaard, K. H.; Naderi, Y.; Iversen, L. V.; Karlsmark, T.; Knudsen, J. B.; Gil, J. G.; Lopez, J. C. F.; Tasende, J. A. P.; Gonzales, M. F.; Sandoval, A. A.; del Carmen Torres Martin, M.; Corteguera, M.; Barca, B. A.; Montes, I. C.; de la Torre, R. G.; Victoria Egurbide, M.; Pros, A.; Munoz, J.; Simeon, C. P.; Espinosa, G.; Espinposa, G.; Rodriguez, M. A. P.; Castellvi, I.; Mascaro, J. M.; Bellido, D.; Manzanedo, V. S.; Huertas, M. P.; Sanchez, M. D. M.; Trenado, M. S. S.; Garcia, P. V.; Gines Martinez, F.; Angeles Aquirre, M.; del Rio, A. H.; Vazquez, J. L. G.; Coleman, J. V.; Lopez, M. R.; Sanchez, P. S.; Aizpuru, E. M. F.; Mateo, F. J. N.; Callejas, J. L.; Ortego, N.; Santo, M. P.; Rubio, M.; Martin, I.; Cruz, A.; Crespo, M.; Ramos, P. C.; Fernandez, A. S.-A.; Filloy, J. A. M.; Rodriguez, T. R. V.; Marhuenda, A. R.; Blanco, J. J. R.; Hernan, M. G. B.; Mendoza, A. Z.; de la Puente, C.; Rabaneda, E. V.; de Vicuna, R. G.; del Mar Ripoll Macias, M.; del la Pena Lefebvre, P. G.; de Ramon, E.; Camps, M. T.; Fernandez, C.; Miguelez, R.; Uson, J.; Delgado, E. G.; Villaverde, V.; Maceiras, F.; Cruz, J.; Mosquera, J. A.; Mera, A.; Pampin, E. P.; Blanco, J. S.; Maneiro, J. R.; Diaz, J. J.; Losada, L.; Caamano, M.; Fernandez, S.; Insua, S. A.; Laurin, C. U.; Sanchez, J.; Fernandez, N. C.; Becerra, N. D.; Garcia, A.; Nicolas, G. M.; del Carmen Ortega de la O, M.; Rueda, A.; Calvo, J.; Roman Ivorra, J.; Sancho Alegre, J. J.; Barbado, J.; Montes, J.; Saez, L.; Kaarto, A.; Makinen, H.; Madaule, S.; Dadban, A.; Lok, C.; Ferrandiz, D.; Moiton, M. P.; Magy-Bertrand, N.; Taieb, A.; Droitcourt, C.; Belin, E.; Balquiere, S.; Prey, S.; Boulon, C.; Constans, J.; Richez, C.; Sassolas, B.; Misery, L.; Greco, M.; collet, E.; Berthier, S.; Leguy-Seguin, V.; Imbert, B.; Carpentier, P.; Blaise, S.; Maillard, H.; Beneton, N.; Launay, D.; Hachulla, E.; Woijtasik, G.; Charlanne, H.; Lambert, M.; Jourdain, N.; Hatron, P. Y.; Morell, S.; Spars, A.; Couraud, A.; Doeffel-hantz, V.; Fauchais, A. L.; Vidal, E.; Goudran, G.; Bezanahary, H.; Boussely, N.; Manea, P.; Dumonteil, S.; Loustaud-ratti, V.; Hot, A.; Coppere, B.; Desmurs-Clavel, H.; Ninet, J.; Girard-Madoux, M. H.; Granel, B.; Keynote, A.; Khau van Kien, A.; Rullier, P.; Le Quellec, A.; Riviere, S.; Bessis, D.; Cohen, J. D.; Farcas, C.; Granel-brocard, F.; Agard, C.; Durant, C.; Fuzibet, J. G.; Queyrel, V.; Berezne, A.; Guillevin, L.; Mouthon, L.; Frances, C.; Toledano, C.; Cabane, J.; Tiev, K.; Farge, D.; Keshtmand, H.; Lazareth, I.; Priollet, P.; Michon-Pasturel, U.; Wipff, J.; Assous, N.; Cartry, O.; Kostrzwewa, E.; Doutre, M. S.; Blum, L.; Reguiai, Z.; Letremy, A.; Perlat, A.; Cazalets-lacoste, C.; Decaux, O.; Jego, P.; Duval-modeste, A. B.; Deboves, O.; Sordet, C.; Chatelus, E.; Chiffot, H.; Sibillia, J.; Couret, B.; Moulis, G.; Sailler, L.; Adoue, D.; Gaches, F.; Diot, E.; Skowron, F.; Zenone, T.; Quemeneur, T.; Kyndt, X.; Wahl, D.; Zuily, S.; Moline, T.; Bravetti, V.; Galanopoulos, N.; Vasilopoulos, D.; Vlachoyannopoulos, P.; Kritikos, I.; Tsifetaki, N.; Koutroumbas, A.; Garyfallos, A.; Athanassiou, P.; Aslanidis, S.; Kamali, S.; Dimitroulas, T.; Galanopoulo, V.; Elezoglou, A.; Grier, A.; Murray, M.; O'Rourke, M.; Gabrielli, A.; Lapadula, G.; Serafino, L.; Terlizzi, N.; Bellissimo, S.; Stisi, S.; Malavolta, N.; Airo, P.; Vacca, A.; Battaglia, E.; Foti, R.; Mazzuca, S.; Bortoluzzi, A.; Trotta, F.; Galluccio, F.; Marucci, A.; Cantatore, F.; Bucci, R.; Puppo, F.; de Angeli, R.; Grassi, W.; Cipriani, P.; Mazzone, A.; Faggioli, P.; Severino, A.; Scorza, R.; Belloli, L.; Ughi, N.; Antivalle, M.; del Papa, N.; Maglione, W.; Zeni, S.; Ferri, C.; Colaci, M.; Varcasia, G.; Cuomo, G.; Cozzi, F.; Triolo, G.; Gatti, S.; Montecucco, C. M.; Doveri, M.; Nigro, A.; Olivieri, I.; Bajoochi, G.; Rosato, E.; Salsano, F.; Faustini, F.; Ferraccioli, G.; Colonna, L.; Pallotta, S.; Riccieri, V.; Mussi, A.; Bellisai, F.; Galeazzi, M.; Fusaro, E.; Saracco, M.; Pellerito, R.; Masolini, P.; de Vita, S.; Lombardi, S.; Lunardi, C.; Moolenburgh, J. D.; Heurkens, A. H. M.; Voskuyl, A.; Hak, A. E.; Stroes, E. S. K.; Remans, J.; Gerdes, V.; van Woerkom, J. M.; de Long, A. J. L.; Kaasjager, H. A. H.; Visser, H.; Janssen, M.; van Guldener, C.; van Neer, F.; Vos, P.; Peters, A. J.; Hulsmans, H.; Ronday, K.; Goekoop, R.; Ewals, J.; Valentijn, R.; de Bois, M.; Westedt, M. L.; Siewertsz van Reesema, D.; Knifjj-Dutmer, E.; Stolk, J. N.; Willems, H.; Kuiper-geertsma, D. G.; Baudaoin, P.; Fretter, P.; Westra, R.; Sonnaville, P. B. J.; Smit, A.; Bootsma, H.; Brouwer, L.; Bijl, M.; Molders, N.; Lebrun, C.; van der Veen, M. J.; Noordzij, M.; Houben, H.; Landewe, R. M. B.; Vercoutere, W.; Jahangier de Veen, Z. N.; Zijlstra, T. R.; Ubels, F.; Bruyn, G.; Jansen, P.; Schuerwegh, A.; Huizinga, T. W. J.; Paassen, P.; Hurkens, T.; Geurts, M.; van den Hoogen, F.; Vonk, M.; Jacobs, P. J. C.; Groenendael, J. H. L. M.; Seys, P.; van Zeben, D.; van Paassen, H.; Groenendael, J.; Han, K. H.; Wlarvens, M.; van Hagen, M.; van Daele, P.; Dolhain, R.; Gerards, A. H.; van der Lubbe, P.; Kanter, M. D. E.; Muller, W. H.; Ton, E.; van Krugten, M.; van Gameren, I.; Lanting, P.; den Hengst, C.; Gjessdal, C. G.; Hjertaker, S. L.; Madland, T. M.; Bendvold, A.; Bitter, H.; Hoffmann-Vold, A. M.; Midtvedt, O.; Bakland, G.; Aslkaksen, H. K.; Seip, M.; Kalstad, S.; Koldingsnes, W.; Grandauent, B.; Nordvag, B. Y.; Stran, E. K.; Skomsvoll, J.; Andersen, M.; Thomsen, R. S.; Pedersen, T.; Bakkeheim, V.; Cordeiro, A.; Alves, J.; Oliveira, S.; Coelho, P.; Resende, C.; Ponte, C.; Almeida, I.; Silva, I.; Santos, C.; Camara, I.; Costa, J.; Hellstrom, H.; Mohammad, A.; Lind, I.; Lind, K.; Bracin, T.; Liljequist, E.; Vingren, T.; Ostenson, A.; Hermansson, E.; Thorsson, C.; Soderlin, M.; Nordin, A.; Waldheim, E.; Vengemyr, K.; Albertsson, K.; Karlsson, M. L.; Rydvald, Y.; Rizk, M.; Dolnicar, A. S.; Lukac, J.; James, J.; McHugh, N.; Cole, S.; Brown, S.; Hamilton, A.; Faizal, A.; Hall, F.; Murphy, K.; Skingle, S.; Harris, H.; Madhok, F.; Hampson, R.; Baguley, E.; Ogunbambi G, O.; Lamb, J.; Anderson, M.; Moots, R.; White-Alao, B.; Morrison, C.; Dobson, J.; Gordon, P.; Salerno, R.; Denton, C.; Parker, L.; Ochiel, R.; Vincent, R.; Zimba, S.; Ngcozana, T.; Xu, Y.; D'Cruz, D.; Choong, L. M.; Herrick, A.; Wragg, E.; Manning, J.; Moore, T.; Kelsey, C.; Chakravarty, K.; Skyes, H.; Athiveer, P.
The Digital Ulcers Outcome (DUO) Registry was designed to describe the clinical and antibody characteristics, disease course and outcomes of patients with digital ulcers associated with systemic sclerosis (SSc). The DUO Registry is a European, prospective, multicentre, observational, registry of SSc
Fink, C. Dennis
An exploratory study was conducted to obtain information regarding staff requirements in small tumor registry centers, involving a brief analysis of existing tumor registry centers and exploration of training and organizational factors that might be associated with establishing new centers. Activities performed by tumor registry personnel were…
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.
Anda, Erik Eik; Nedberg, Ingvild Hersoug; Rylander, Charlotta; Gamkrelidze, Amiran; Turdziladze, Alexander; Skjeldestad, Finn Egil; Ugulava, Tamar; Brenn, Tormod
Georgia is the first developing country in the world to have established a national digital, medical birth registry. The Georgia Birth Registry was officially inaugurated on 1 January, 2016. The purpose of this article is to assess the quality of selected variables and present preliminary results from the year 2016. The Registry resembles the Nordic birth registries in structure. There are 285 medical facilities involved, each entering 267 variables from week 12 of pregnancy to hospital discharge. In 2016, 52 399 women and 53 236 newborns were recorded as valid entries in the Georgian Birth Registry. The completeness of the Registry in 2016 was 93.9 %. The difference between the reported number of newborns in the Registry and in official statistics was 3441. The mean gestational age was 271.3 days and the Caesarean section rate 43.5 %. The mean birth weight was 3262 g. Newborns delivered by Caesarean section had a lower gestational age and lower birth weight compared to those delivered vaginally. There are more newborns registered annually as Georgian citizens than the number of infants born in the country. This leads to inaccurate official reporting on perinatal mortality rates.
Ludvigsson, Jonas F; Håberg, Siri E; Knudsen, Gun Peggy; Lafolie, Pierre; Zoega, Helga; Sarkkola, Catharina; von Kraemer, Stephanie; Weiderpass, Elisabete; Nørgaard, Mette
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.
E. L. Nasonov
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.
Coi, Alessio; Santoro, Michele; Pierini, Anna; Marrucci, Sonia; Pieroni, Federica; Bianchi, Fabrizio
Population-based registries play a key role in the epidemiological surveillance of congenital anomalies (CAs). This study is aimed at improving the epidemiological surveillance and providing prevalence estimates of rare CAs using the Registry of Rare Diseases as an added data source to the Registry of Congenital Anomalies. Cases of diagnosed rare CAs (2006-2013) were extracted from the Tuscany Registry of Rare Diseases and the Tuscany Registry of Congenital Anomalies in order to set up an integrated dataset. Prevalence (per 100,000 births; 95% confidence interval) was calculated for each rare CA. Overall, 56 rare CAs were analyzed including 656 cases, of whom 121 (18.4%) were retrieved from the Registry of Rare Diseases that provided a major contribution for rare CAs for which a prenatal diagnosis is difficult, or for CAs more easily diagnosed in the postneonatal period. After data integration, an increased prevalence estimate was observed in particular for atresia of bile ducts (6.24; 3.57-10.14), tuberous sclerosis (2.34; 0.86-5.10), Kabuki syndrome (1.95; 0.63-4.55), and some monogenic CAs. This study represents an example of integration of registries operating in the field of rare diseases. Providing the accurate prevalence of rare CAs is a key point to improving surveillance, supporting public health policies, and planning healthcare. © 2017 S. Karger AG, Basel.
Laguardia, Josué; Piolli, Alessandro Luís; Prevot, Margareth; Ramalho, Luciano; Gamarski, Ricardo; Nishizawa, Claudio
Over the past five years, efforts to set up a Brazilian clinical trials registry have progressed from early discussions in academic forums through to the establishment of the registry as a web-based computer platform. This article describes the process of developing and introducing the Brazilian Clinical Trials Registry (ReBEC), and its relationship with the authorities that regulate clinical research in Brazil. The Brazilian Clinical Trials Registry and the multilingual, free and open source, internet-based software developed to manage it are outcomes of partnerships among Brazilian federal and international health agencies. Information for describing the technical and operational dimensions of Rebec was drawn from technical documents and the records of the OpenTrials software development team and the ReBEC executive and advisory committees, which are available in free-access repositories. The Brazilian Clinical Trials Registry was launched in December 2010, and approved as a primary registry of the WHO ICTRP network in April 2011. ReBEC's arrival on-line and its acceptance as an ICTRP primary registry is a significant step in consolidating a policy of free access to information on clinical research in Brazil. © 2011 Blackwell Publishing Asia Pty Ltd and Chinese Cochrane Center, West China Hospital of Sichuan University.
Paxton, Elizabeth W; Inacio, Maria Cs; Kiley, Mary-Lou
Considering the high cost, volume, and patient safety issues associated with medical devices, monitoring of medical device performance is critical to ensure patient safety and quality of care. The purpose of this article is to describe the Kaiser Permanente (KP) implant registries and to highlight the benefits of these implant registries on patient safety, quality, cost effectiveness, and research. Eight KP implant registries leverage the integrated health care system's administrative databases and electronic health records system. Registry data collected undergo quality control and validation as well as statistical analysis. Patient safety has been enhanced through identification of affected patients during major recalls, identification of risk factors associated with outcomes of interest, development of risk calculators, and surveillance programs for infections and adverse events. Effective quality improvement activities included medical center- and surgeon-specific profiles for use in benchmarking reports, and changes in practice related to registry information output. Among the cost-effectiveness strategies employed were collaborations with sourcing and contracting groups, and assistance in adherence to formulary device guidelines. Research studies using registry data included postoperative complications, resource utilization, infection risk factors, thromboembolic prophylaxis, effects of surgical delay on concurrent injuries, and sports injury patterns. The unique KP implant registries provide important information and affect several areas of our organization, including patient safety, quality improvement, cost-effectiveness, and research.
Murphy, M. R.
Selected literature on individual differences in pilot performance is reviewed in order to indicate a possible direction for research. Approaches to studying pilot decision-making processes are discussed, with emphasis given to the wrong-model approach in which accident and incident data, or 'process tracing' provide experimental computational structures. Analysis of data from a simulator experiment on V/STOL zero-visibility landing performance suggests that the order of ranking of individual pilot's effectiveness varies with particular situations defined by combinations of tracking requirements (e.g., glide slope, localizer) and glide-slope segment, or speed requirements; the data are being further analyzed.
Raffaeli, William; Sarti, Donatella; Demartini, Laura; Sotgiu, Alberto; Bonezzi, Cesare
Ziconotide is commonly used for intrathecal (IT) therapy of chronic pain, and has been recently indicated as a first-line IT drug. It is also extremely useful for patients intolerant or refractory to the common IT drugs (such as morphine). The literature, excluding registration studies, mostly includes small samples, and gives only fragmentary evidence on the long-term risks and benefits of ziconotide. To collect data on safety and efficacy of long-term ziconotide IT infusion in Italian pain centers. Retrospective cohort study on the use of ziconotide in Italy. The study was designed and coordinated by the Foundation ISAL (Algological Sciences Research and Training Institute). Patients treated with ziconotide from several pain therapy and neurosurgery units were included in the study, allowing the creation of the first Italian Registry of Ziconotide. Seventeen Italian public and private pain and neurosurgery centers. Patients suffering from cancer or non-cancer intractable chronic pain who had been treated with ziconotide IT infusion for at least one month. Efficacy was analyzed considering changes on the visual analog scale of pain intensity from baseline observation. Safety was assessed by monitoring the number and intensity of adverse events. Currently, 104 patients are included in the Italian Registry of Ziconotide. Ziconotide was administered as the first IT drug choice to 55 patients. Seventy-two patients reported at least a 30% pain intensity reduction with a mean dose of 4.36 ug/d. The sustained analgesic effect (P ziconotide IT therapy was observed in a group of 45 patients who remained in the study over 6 months without treatment interruptions and with relatively stable doses. Sixty-six patients reported at least one side effect related to ziconotide. However, adverse events have not always been decisive for treatment interruptions. Data were collected retrospectively from different pain centers that used different methods for ziconotide treatment and
Sharma, Himanshu; Mehdi, S A; MacDuff, E; Reece, A T; Jane, M J; Reid, R
Retrospective case study of 13 cases of Paget sarcoma of the spine accrued from a prospectively collected Tumor Registry database. To analyze the clinical, radiologic, and histologic features of Paget sarcoma of the spine and to determine the factors influencing the prognosis. Paget disease of bone is a common disorder with the spine being involved in over 50% of patients. However, sarcomatous degeneration in the vertebral column is an extremely rare complication. There is very little in the literature with regard to clinical presentation and prognosis of patients with Paget sarcoma affecting the vertebral column. Between January 1944 and December 2003, 89 patients were registered with a diagnosis of Paget sarcoma in the Scottish Bone Tumor Registry. Thirteen patients with Paget sarcoma of the spine were analyzed with regard to their clinical, radiologic, and histopathologic features along with the prognostic predictors. The mean age was 66.9 years (range: 56-79 years). There were 10 males and three females. There were seven cases involving the sacral spine (63.6%), three cases involving lumbar vertebrae, two affecting the dorsal spine, and one with diffuse dorsolumbar involvement (D11-L3). The mode of presentation was progressively increasing low back pain (in all 13), unilateral sciatica (six; left-sided, five; right-sided, one), bilateral sciatica (two), lower limb weakness (eight), and autonomic dysfunction (four). Ten of 13 cases (76.9%) were osteosarcoma. The rest were chondrosarcoma (n = 1), fibrosarcoma (n = 1), and malignant fibrous histiocytoma (n = 1). Decompression laminectomy was performed in three patients with progressive neurologic deficit. Eight patients had received radiotherapy. The mean survival was 4.22 months. This series confirmed that Paget sarcoma of the spine has a very poor prognosis. We found a constellation of symptomatology in patients with sarcomatous Paget spine resulting from radiculomedullary compression, primarily lumbosacral
Verger, C; Ryckelynck, J-P; Duman, M; Veniez, G; Lobbedez, T; Boulanger, E; Moranne, O
The Registre de Dialyse Péritonéale de Langue Française (RDPLF Registry) is a non-profit association that has been set up to assist physicians and nurses in evaluating their practical experience and results regarding peritoneal dialysis (PD). Five French-speaking and two Spanish-speaking countries have participated in this initiative (which includes 21 000 patients). In France, 82% of all PD patients are included in the registry and the main results for the period from 1995 to January 2006 form the basis of this report: of 11 744 incident patients with a median age of 71 years, 21.5% were over 80 years of age and 56% were not able to perform PD treatment at home without assistance. Eighty-six percent of the latter group received external assistance from a private nurse and 14% were aided by their family. The overall average rate of peritonitis was one episode every 29 months. The probability of being peritonitis-free appeared to be better for patients on automated PD (59.4% at 2 year) than for those on continuous ambulatory PD (55.3%), but this finding requires further validation. The average waiting time before transplantation was about 2 years. In patients who had undergone transplantation, the peritonitis rate was one episode per 42 months before transplantation compared to one episode per 29 months for patients who had not received a transplant. Eighty-three percent of patients had a hemoglobin level greater than 11 g%. Catheter survival was 92% at 2 years post-insertion and 85% at 5 years, with 94% being implanted by experienced surgeons. In conclusion, the RDPLF results demonstrate that PD may be successfully prescribed for older patients who receive assistance either from their family or from a nurse. Further, a larger number of younger patients should also be prescribed this technique in France. Patients eligible for transplantation and on short-term PD have the lowest risk of developing peritonitis; PD before transplantation may help prolong residual
Brozova, L; Schwarz, D; Snabl, I; Kalina, J; Pavlickova, B; Komenda, M; Jarkovský, J; Němec, P; Horinek, D; Stefanikova, Z; Pour, L; Hájek, R; Maisnar, V
The Registry of Monoclonal Gammopathies (RMG) was established by the Czech Myeloma Group in 2007. RMG is a registry designed for the collection of clinical data concerning diagnosis, treatment, treatment results and survival of patients with monoclonal gammopathies. Data on patients with monoclonal gammopathy of undetermined significance (MGUS), Waldenström macroglobulinaemia (WM), multiple myeloma (MM) or primary AL ("amyloid light-chain") amyloidosis are collected in the registry. Nineteen Czech centres and four Slovak centres currently contribute to the registry. The registry currently contains records on more than 5,000 patients with MM, almost 3,000 patients with MGUS, 170 patients with WM and 26 patients with primary AL amyloidosis, i.e. more than 8,000 records on patients with monoclonal gammopathies altogether. This paper describes technology employed for the collection, storage and subsequent online visualisation of data. The CLADE-IS platform is introduced as a new system for the collection and storage of data from the registry. The form structure and functions of the new system are described for all diagnoses in general; these functions facilitate data entry to the registry and minimise the error rate in data. Publicly available online visualisations of data on patients with MGUS, WM, MM or primary AL amyloidosis from all Czech or Slovak centres are introduced, together with authenticated visualisations of data on patients with MM from selected centres. The RMG represents a data basis that makes it possible to monitor the disease course in patients with monoclonal gammopathies on the population level.Key words: Registry of Monoclonal Gammopathies - RMG - registries - monoclonal gammopathies - CLADE-IS - data visualisation - database.
: inequities in power, money and resources. They argued that social and economic inequalities underpin the determinants of health: the range of interacting factors that shape health and well-being. Recent analyses of health inequalities and their causes in Europe have supported the findings of the CSDH......The intention of the Health Equity Pilot Project (HEPP) is to maintain focus on and mainstream action on health inequalities. This forms a basis for and is complementary to work on developing the new Joint Action on Health Inequalities in 2017. This is being achieved by focusing work on health...... social groups based on these determinants. In 2008, the World Health Organization (WHO) Commission on Social Determinants of Health (CSDH) concluded that social inequalities in health arise because of inequalities in the conditions of daily life and the fundamental drivers that give rise to them...
From a total of 33 submissions, four pilot sites for the Faculty of Emergency Nursing have now been announced by the RCN A&E Nursing Association. They are the University of Hospital Wales, Cardiff, Royal Gwent Hospital, Newport, Neville Hall, Abergavenny, and Royal Glamorgan Hospital, Llantrisant (linked with University of Wales College of Medicine); City Hospital, Sunderland, Queen Elizabeth Hospital, Gateshead and Dryburn Hospital, Durham (linked with University of Sunderland); Altnagalvin Hospital Health and Social Services Trust, Belfast City Hospital, Craigavon Area Hospitals Trust, Royal Hospitals Trust, Belfast and Ulster Community and Hospitals Trust (linked with University of Ulster); and Bart's and London NHS Trust, Newham Healthcare and Homerton Hospital NHS Trust (linked with City University). Rob Crouch, Chair, Faculty Project Management Group said 'This is an exciting step for the Faculty concept where we can begin to turn the work of the last five years into reality'.
The pilot of the aircraft had the role that was very important in the flight, especially to guarantee the security and the safety of the flight. Therefore, the pilot must know about his authority as the pilot. The authority of this pilot related to the competence certificate and the licence. Giving of the competence certificate and the licence to the pilot of the aircraft must meet certain conditions and was given by certain sides. Legally, the competence certificate and this licence were ar...
We perform molecular dynamics simulations to study the registry effect on the thermal conductivity of few-layer graphene. The interlayer interaction is described by either the Lennard-Jones potential or the registry-dependent potential. Our calculations show that the thermal conductivity in few-layer graphene from both potentials are close to each other, i.e the registry effect is essentially not important. It is because the thermal transport in few-layer graphene is mainly limited by the int...
Loane, Maria; Dolk, Helen; Garne, Ester
, completeness of information on EUROCAT variables, timeliness of data transmission, and availability of population denominator information. This article describes each of the individual DQIs and presents the output for each registry as well as the EUROCAT (unweighted) average, for 29 full member registries...... collection and ascertainment, and they allow annual assessment for monitoring continuous improvement. The DQI are constantly reviewed and refined to best document registry procedures and processes regarding data collection, to ensure appropriateness of DQI, and to ensure transparency so that the data...
Ieva, Francesca; Gale, Chris P; Sharples, Linda D
Clinical registries are established as tools for auditing clinical standards and benchmarking quality improvement initiatives. They also have an emerging role (as electronic health records) in cardiovascular research and, in particular, the conduct of RCTs. While the RCT is accepted as the most robust experimental design, observational data from clinical registries has become increasingly valuable for RCTs. Data from clinical registries may be used to augment results from RCTs, identify patients for recruitment and as an alternative when randomization is not practically possible or ethically desirable. Here the authors appraise the advantages and disadvantages of both methodologies, with the aim of clarifying when their joint use may be successful.
This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are available in the FRS individual feature layers. The layers comprise the FRS major program databases, including:Assessment Cleanup and Redevelopment Exchange System (ACRES) : brownfields sites ; Air Facility System (AFS) : stationary sources of air pollution ; Air Quality System (AQS) : ambient air pollution data from monitoring stations; Bureau of Indian Affairs (BIA) : schools data on Indian land; Base Realignment and Closure (BRAC) facilities; Clean Air Markets Division Business System (CAMDBS) : market-based air pollution control programs; Comprehensive Environmental Response, Compensation, and Liability Information System (CERCLIS) : hazardous waste sites; Integrated Compliance Information System (ICIS) : integrated enforcement and compliance information; National Compliance Database (NCDB) : Federal Insecticide, Fungicide, and Rodenticide Act (FIFRA) and the Toxic Substances Control Act (TSCA); National Pollutant Discharge Elimination System (NPDES) module of ICIS : NPDES surface water permits; Radiation Information Database (RADINFO) : radiation and radioactivity facilities; RACT/BACT/LAER Clearinghouse (RBLC) : best available air pollution technology requirements; Resource Conservation and Recovery Act Information System (RCRAInfo) : tracks generators, transporters, treaters, storers, and disposers of haz
Full Text Available BACKGROUND: Peutz-Jeghers syndrome (PJS is characterized by intestinal polyposis, mucocutaneous pigmentation and an increased cancer risk, usually caused by mutations of the STK11 gene. This study collected epidemiological, clinical and genetic data from all Uruguayan PJS patients. METHODS: Clinical data were obtained from public and private medical centers and updated annually. Sequencing of the STK11 gene in one member of each family was performed. RESULTS AND DISCUSSION: 25 cases in 11 unrelated families were registered (15 males, 10 females. The average age of diagnosis and death was 18 and 41 years respectively. All patients had characteristic PJS pigmentation and gastrointestinal polyps. 72% required urgent surgery due to intestinal obstruction. 3 families had multiple cases of seizure disorder, representing 20% of cases. 28% developed cancer and two patients had more than one cancer. An STK11 mutation was found in 8 of the 9 families analyzed. A unique M136K missense mutation was noted in one family. Comparing annual live births and PJS birth records from 1970 to 2009 yielded an incidence of 1 in 155,000. CONCLUSION: The Uruguayan Registry for Peutz-Jeghers patients showed a high chance of emergent surgery, epilepsy, cancer and shortened life expectancy. The M136K missense mutation is a newly reported STK 11 mutation.
Stell, Anthony; Sinnott, Richard
The very nature of rare diseases means that information is often sparse and highly distributed, and as a result progress in the field is more challenging to conduct. ENSAT-CANCER is an EU-FP7 funded initiative to develop a virtual research environment (VRE) offering a digitally interconnected infrastructure for distributed clinicians specialising in rare adrenal tumours to communicate and collaborate with distributed biomedical research communities. The core of the VRE is a registry that holds vital patient information from specialist centres around Europe, covering different types of adrenal tumours. The VRE also hosts a range of other enabling services including sample barcoding, bio-sample exchange mechanisms, an integrated linkage scheme to other trials and studies, summary statistics and report generation, image hosting - all of which are available in a seamless, security-driven environment. This paper presents the key challenges of this endeavour, the technical solutions that have been developed to address them and reporting the uptake and adoption of the work (currently at 2472 patient records and rising).
Background: Peutz-Jeghers syndrome (PJS) is characterized by intestinal polyposis, mucocutaneous pigmentation and an increased cancer risk, usually caused by mutations of the STK11 gene. This study collected epidemiological, clinical and genetic data from all Uruguayan PJS patients. Methods: Clinical data were obtained from public and private medical centers and updated annually. Sequencing of the STK11 gene in one member of each family was performed. Results and discussion: 25 cases in 11 unrelated families were registered (15 males, 10 females). The average age of diagnosis and death was 18 and 41 years respectively. All patients had characteristic PJS pigmentation and gastrointestinal polyps. 72% required urgent surgery due to intestinal obstruction. 3 families had multiple cases of seizure disorder, representing 20% of cases. 28% developed cancer and two patients had more than one cancer. An STK11 mutation was found in 8 of the 9 families analyzed. A unique M136K missense mutation was noted in one family. Comparing annual live births and PJS birth records from 1970 to 2009 yielded an incidence of 1 in 155,000. Conclusion: The Uruguayan Registry for Peutz-Jeghers patients showed a high chance of emergent surgery, epilepsy, cancer and shortened life expectancy. The M136K missense mutation is a newly reported STK 11 mutation. © 2013 Tchekmedyian et al.
De Witt Wijnen, H.R. [De Brauw Blackstone Westbroek, Den Haag (Netherlands)
The European Commission has made a first draft available of the Regulation for a standardized and secured system of CO2 -emissions registries. Transactions under the European emissions trading scheme will be settled in accordance with the rules of this Regulation. This article gives a summary of the Regulation and describes the way emissions transactions are going to take place. Any person can open an account in an emissions register. The relation between the Kyoto Protocol and the Regulation is discussed, such as the role of the Commitment Period Reserve. Emission Reductions will not qualify as registered goods under Dutch law, as information on individual accounts will not be made public. [Dutch] Begin november van het vorig jaar heeft de Europese Commissie een concept voor commentaar laten circuleren van een verordening inzake een gestandaardiseerd en beveiligd stelsel van registers (de 'Register Verordening'). Aangezien er op dit moment hard gewerkt wordt aan een wijziging van de Wet milieubeheer in verband met de invoering van een hoofdstuk inzake de handel in emissierechten, lijkt het nuttig om de Register Verordening thans al te bespreken. De Wet milieubeheer zal de Register Verordening hebben te volgen. Bovendien zal kennismaking met de Register Verordening het begrip voor de beoogde werking van de toekomstige Europese emissiehandel vergroten. In dit artikel is mede gebruik gemaakt van wetenswaardigheden opgedaan tijdens een bijeenkomst met de opstellers van de Register Verordening in november 2003.
Weaver, Douglas James [Los Alamos National Lab. (LANL), Los Alamos, NM (United States)
The mission of Waste Isolation Pilot Plant (WIPP) is to demonstrate the safe, environmentally sound, cost effective, permanent disposal of Transuranic (TRU) waste left from production of nuclear weapons.
Department of Transportation — This data were collected during the Safety Pilot Model Deployment (SPMD). The data sets that these entities will provide include basic safety messages (BSM), vehicle...
Auffret, R.; Delahaye, R. P.; Metges, P. J.; VICENS
Pathological forms of spinal pain engendered by piloting helicopters were clinically studied. Lumbalgia and pathology of the dorsal and cervical spine are discussed along with their clinical and radiological signs and origins.
National Oceanic and Atmospheric Administration, Department of Commerce — Pilot Balloon observational forms for the United States. Taken by Weather Bureau and U.S. Army observers. Period of record 1918-1960. Records scanned from the NCDC...
National Oceanic and Atmospheric Administration, Department of Commerce — Monthly winds aloft summary forms summarizing Pilot Balloon observational data for the United States. Generally labeled as Form 1114, and then transitioning to Form...
National Oceanic and Atmospheric Administration, Department of Commerce — The Rockfish Pilot Program was a five-year project that allowed harvesters to form voluntary cooperatives and receive an exclusive harvest privilege for groundfish...
Politica l Science from Texas A&M University in 1973. He earned his commission S’- ,t the same time. This project will fulfill partial r(,quir(,m,nts...12 years of Air Force pilot retention rates , (2:12: 5:2). 0>. _ , FISCAL YEAR PILOT RETENTION RATES 1976 50.6% 1977 47.9% 1978 39.6% 1979 26.0% 1980
Garami, Miklós; Schuler, Dezső; Jakab, Zsuzsanna
National Childhood Cancer Registry has been operated since 1971 by the Hungarian Paediatric Oncology Network. This Registry collects data on epidemiology, treatment modalities and effectiveness, as well as late follow-up of childhood cancers. An internet-based paediatric cancer registration and communication system for the Hungarian Paediatric Oncology Network has been introduced in April, 2010. The National Childhood Cancer Registry contains data of all paediatric cancer patients (0-18 yrs) who have insurance covered by the Hungarian Social Security Card. Creation (1971) and operation of the National Childhood Cancer Registry have been very important steps in the field of childhood oncology to evaluate the efficiency of paediatric oncology treatments as well as maximize return on medical investment.
... needs to be strategic, focused on product areas of high importance, utilize methodologies that integrate...; (3) registries in relation to the Sentinel provision in the FDA Safety and Innovation Act calling for...
Full Text Available The reason for this research is the opinion of Civilists that Roman law did not make any contribution in the area of lend recording. It is true that during the Roman history registration was not a necessary condition of acquiring ownership, as was the case in the German system of land registers, neither did Roman law contain all the principles of modern land registers. Nevertheless, it cannot be claimed that the modern land registry system is completely original. Elements of modern land registries existed already in Roman times. These were: the cadastres, the public (censor's books and the requirement for written documents in transactions related to immovable property, especially in sales contract. It is not easy to reconstruct the elements of modern land registries in ancient Rome as available sources are in fragments; however there is sufficient basis to claim that modern land registries have their predecessor in Roman law.
Ludvigsson, Jonas F; Håberg, Siri E; Knudsen, Gun Peggy; Lafolie, Pierre; Zoega, Helga; Sarkkola, Catharina; von Kraemer, Stephanie; Weiderpass, Elisabete; Nørgaard, Mette
... 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...
Department of Homeland Security — This GIS dataset contains data on wastewater treatment plants, based on EPA's Facility Registry Service (FRS) and NPDES, along with Clean Watersheds Needs Survey...
... information with stakeholders. By expanding the registry to include APHIS' Animal Care, Biotechnology... register or update their profiles by clicking on the red envelope on the APHIS home page at www.aphis.usda...
National Aeronautics and Space Administration — The Agency for Toxic Substances Disease Registry (ATSDR) Hazardous Waste Site Polygon Data with CIESIN Modifications, 1996 is a database providing georeferenced data...
Full Text Available The Global Registry of Biodiversity Repositories is an online metadata resource for biodiversity collections, the institutions that contain them, and associated staff members. The registry provides contact and address information, characteristics of the institutions and collections using controlled vocabularies and free-text descripitons, links to related websites, unique identifiers for each institution and collection record, text fields for loan and use policies, and a variety of other descriptors. Each institution record includes an institutionCode that must be unique, and each collection record must have a collectionCode that is unique within that institution. The registry is populated with records imported from the largest similar registries and more can be harmonized and added. Doing so will require community input and curation and would produce a truly comprehensive and unifying information resource.
National Aeronautics and Space Administration — The Agency for Toxic Substances and Disease Registry (ATSDR) Hazardous Waste Site Polygon Data, 1996 consists of 2042 polygons for selected hazardous waste sites...
Erichsen, Rune; Lash, Timothy L; Hamilton-Dutoit, Stephen J
Diagnostic histological and cytological specimens are routinely stored in pathology department archives. These biobanks are a valuable research resource for many diseases, particularly if they can be linked to high quality population-based health registries, allowing large retrospective epidemiol...
Orlando, Giuseppe; Adam, Rene; Mirza, Darius; Soderdahl, Goran; Porte, Robert J.; Paul, Andreas; Burroughs, Andrew K.; Seiler, Christian A.; Colledan, Michele; Graziadei, Ivo; Garcia Valdecasas, Juan-Carlos; Pruvot, Francois-Rene; Karam, Vincent; Lerut, Jan
Background. Liver transplantation (LT) is performed for hemangiosarcoma (HAS) despite disappointing results. Methods. Retrospective study of 14 males and 8 females reported to the European Liver Transplant Registry. In view of the difficult differential diagnosis between HAS and hemangioendothelioma
Ehrhart, Susan M. (ed.); Filipy, Ronald E. (ed)
This report documents the activities of the United States Transuranium and Uranium Registries (USTUR) from February 2001 through January 2002. Progress in continuing collaborations and several new collaborations is reviewed.
The EPA analyzed data from the FracFocus Chemical Disclosure Registry 1.0 to better understand the chemicals and water used to hydraulically fracture oil and gas production wells across the United States.
The EPA analyzed data from the FracFocus Chemical Disclosure Registry 1.0 to better understand the chemicals and water used to hydraulically fracture oil and gas production wells across the United States.
Full Text Available The Quebec Pain Registry (QPR is a large research database of patients suffering from various chronic pain (CP syndromes who were referred to one of five tertiary care centres in the province of Quebec (Canada. Patients were monitored using common demographics, identical clinical descriptors, and uniform validated outcomes. This paper describes the development, implementation, and research potential of the QPR. Between 2008 and 2013, 6902 patients were enrolled in the QPR, and data were collected prior to their first visit at the pain clinic and six months later. More than 90% of them (mean age ± SD: 52.76 ± 4.60, females: 59.1% consented that their QPR data be used for research purposes. The results suggest that, compared to patients with serious chronic medical disorders, CP patients referred to tertiary care clinics are more severely impaired in multiple domains including emotional and physical functioning. The QPR is also a powerful and comprehensive tool for conducting research in a “real-world” context with 27 observational studies and satellite research projects which have been completed or are underway. It contains data on the clinical evolution of thousands of patients and provides the opportunity of answering important research questions on various aspects of CP (or specific pain syndromes and its management.
Ostraat, Michele L; Mills, Karmann C; Guzan, Kimberly A; Murry, Damaris
The amount of data being generated in the nanotechnology research space is significant, and the coordination, sharing, and downstream analysis of the data is complex and consistently deliberated. The complexities of the data are due in large part to the inherently complicated characteristics of nanomaterials. Also, testing protocols and assays used for nanomaterials are diverse and lacking standardization. The Nanomaterial Registry has been developed to address such challenges as the need for standard methods, data formatting, and controlled vocabularies for data sharing. The Registry is an authoritative, web-based tool whose purpose is to simplify the community's level of effort in assessing nanomaterial data from environmental and biological interaction studies. Because the Registry is meant to be an authoritative resource, all data-driven content is systematically archived and reviewed by subject-matter experts. To support and advance nanomaterial research, a set of minimal information about nanomaterials (MIAN) has been developed and is foundational to the Registry data model. The MIAN has been used to create evaluation and similarity criteria for nanomaterials that are curated into the Registry. The Registry is a publicly available resource that is being built through collaborations with many stakeholder groups in the nanotechnology community, including industry, regulatory, government, and academia. Features of the Registry website (http://www.nanomaterialregistry.org) currently include search, browse, side-by-side comparison of nanomaterials, compliance ratings based on the quality and quantity of data, and the ability to search for similar nanomaterials within the Registry. This paper is a modification and extension of a proceedings paper for the Institute of Electrical and Electronics Engineers.
Johnson, Jennifer C; Soliman, Amr S; Tadgerson, Dan; Copeland, Glenn E; Seefeld, David A; Pingatore, Noel L; Haverkate, Rick; Banerjee, Mousumi; Roubidoux, Marilyn A
Racial misclassification of American Indian and Alaska Native (AI/AN) individuals as non-AI/AN in cancer registries presents problems for cancer surveillance, research, and public health practice. The aim of this study was to investigate the efficiency of tribal linkages in enhancing the quality of racial information in state cancer registries. Registry Plus Link Plus 2.0 probabilistic record linkage software was used to link the Michigan state cancer registry data (1985-2004; 1,031,168 cancer cases) to the tribal membership roster (40,340 individuals) in July of 2007. A data set was created containing AI/AN cancer cases identified by the state registry, Indian Health Service (IHS) linkages, and tribal linkage. The differences between these three groups of individuals were compared by distribution of demographic, diagnostic, and county-level characteristics using multilevel analysis (conducted in 2007-2008). From 1995 to 2004, the tribal enrollment file showed linkages to 670 cancer cases (583 individuals) and the tribal linkage led to the identification of 190 AI/AN cancer cases (168 individuals) that were classified as non-AI/AN in the registry. More than 80% of tribal members were reported as non-AI/AN to the registry. Individuals identified by IHS or tribal linkages were different from those reported to be AI/AN in terms of stage at diagnosis, tumor confirmation, and characteristics of the county of diagnosis, including contract health services availability, tribal health services availability, and proportion of AI/AN residents. The data linkage between tribal and state cancer registry data sets improved racial classification validity of AI/AN Michigan cancer cases. Assessing tribal linkages is a simple, noninvasive way to improve the accuracy of state cancer data for AI/AN populations and to generate tribe-specific cancer information.
Grossestreuer, Anne V; Gaieski, David F; Donnino, Michael W; Nelson, Joshua I M; Mutter, Eric L; Carr, Brendan G; Abella, Benjamin S; Wiebe, Douglas J
Methods for comparing hospitals regarding cardiac arrest (CA) outcomes, vital for improving resuscitation performance, rely on data collected by cardiac arrest registries. However, most CA patients are treated at hospitals that do not participate in such registries. This study aimed to determine whether CA risk standardization modeling based on administrative data could perform as well as that based on registry data. Two risk standardization logistic regression models were developed using 2453 patients treated from 2000-2015 at three hospitals in an academic health system. Registry and administrative data were accessed for all patients. The outcome was death at hospital discharge. The registry model was considered the "gold standard" with which to compare the administrative model, using metrics including comparing areas under the curve, calibration curves, and Bland-Altman plots. The administrative risk standardization model had a c-statistic of 0.891 (95% CI: 0.876-0.905) compared to a registry c-statistic of 0.907 (95% CI: 0.895-0.919). When limited to only non-modifiable factors, the administrative model had a c-statistic of 0.818 (95% CI: 0.799-0.838) compared to a registry c-statistic of 0.810 (95% CI: 0.788-0.831). All models were well-calibrated. There was no significant difference between c-statistics of the models, providing evidence that valid risk standardization can be performed using administrative data. Risk standardization using administrative data performs comparably to standardization using registry data. This methodology represents a new tool that can enable opportunities to compare hospital performance in specific hospital systems or across the entire US in terms of survival after CA.
Noordzij, Marlies; Kramer, Anneke; Abad Diez, José M.; Alonso de la Torre, Ramón; Arcos Fuster, Emma; Bikbov, Boris T.; Bonthuis, Marjolein; Bouzas Caamaño, Encarnación; Čala, Svetlana; Caskey, Fergus J.; Castro de la Nuez, Pablo; Cernevskis, Harijs; Collart, Frederic; Díaz Tejeiro, Rafael; Djukanovic, Ljubica; Ferrer-Alamar, Manuel; Finne, Patrik; García Bazaga, María de los Angelos; Garneata, Liliana; Golan, Eliezer; Gonzalez Fernández, Raquel; Heaf, James G.; Hoitsma, Andries; Ioannidis, George A.; Kolesnyk, Mykola; Kramar, Reinhard; Lasalle, Mathilde; Leivestad, Torbjørn; Lopot, Frantisek; van de Luijtgaarden, Moniek W.M.; Macário, Fernando; Magaz, Ángela; Martín Escobar, Eduardo; de Meester, Johan; Metcalfe, Wendy; Ots-Rosenberg, Mai; Palsson, Runolfur; Piñera, Celestino; Pippias, Maria; Prütz, Karl G.; Ratkovic, Marina; Resić, Halima; Rodríguez Hernández, Aurelio; Rutkowski, Boleslaw; Spustová, Viera; Stel, Vianda S.; Stojceva-Taneva, Olivera; Süleymanlar, Gültekin; Wanner, Christoph; Jager, Kitty J.
Background This article provides a summary of the 2011 ERA–EDTA Registry Annual Report (available at www.era-edta-reg.org). Methods Data on renal replacement therapy (RRT) for end-stage renal disease (ESRD) from national and regional renal registries in 30 countries in Europe and bordering the Mediterranean Sea were used. From 27 registries, individual patient data were received, whereas 17 registries contributed data in aggregated form. We present the incidence and prevalence of RRT, and renal transplant rates in 2011. In addition, survival probabilities and expected remaining lifetimes were calculated for those registries providing individual patient data. Results The overall unadjusted incidence rate of RRT in 2011 among all registries reporting to the ERA–EDTA Registry was 117 per million population (pmp) (n = 71.631). Incidence rates varied from 24 pmp in Ukraine to 238 pmp in Turkey. The overall unadjusted prevalence of RRT for ESRD on 31 December 2011 was 692 pmp (n = 425 824). The highest prevalence was reported by Portugal (1662 pmp) and the lowest by Ukraine (131 pmp). Among all registries, a total of 22 814 renal transplantations were performed (37 pmp). The highest overall transplant rate was reported from Spain, Cantabria (81 pmp), whereas the highest rate of living donor transplants was reported from Turkey (39 pmp). For patients who started RRT between 2002 and 2006, the unadjusted 5-year patient survival on RRT was 46.8% [95% confidence interval (CI) 46.6–47.0], and on dialysis 39.3% (95% CI 39.2–39.4). The unadjusted 5-year patient survival after the first renal transplantation performed between 2002 and 2006 was 86.7% (95% CI 86.2–87.2) for kidneys from deceased donors and 94.3% (95% CI 93.6–95.0) for kidneys from living donors. PMID:25852881
Noordzij, Marlies; Kramer, Anneke; Abad Diez, José M; Alonso de la Torre, Ramón; Arcos Fuster, Emma; Bikbov, Boris T; Bonthuis, Marjolein; Bouzas Caamaño, Encarnación; Čala, Svetlana; Caskey, Fergus J; Castro de la Nuez, Pablo; Cernevskis, Harijs; Collart, Frederic; Díaz Tejeiro, Rafael; Djukanovic, Ljubica; Ferrer-Alamar, Manuel; Finne, Patrik; García Bazaga, María de Los Angelos; Garneata, Liliana; Golan, Eliezer; Gonzalez Fernández, Raquel; Heaf, James G; Hoitsma, Andries; Ioannidis, George A; Kolesnyk, Mykola; Kramar, Reinhard; Lasalle, Mathilde; Leivestad, Torbjørn; Lopot, Frantisek; van de Luijtgaarden, Moniek W M; Macário, Fernando; Magaz, Ángela; Martín Escobar, Eduardo; de Meester, Johan; Metcalfe, Wendy; Ots-Rosenberg, Mai; Palsson, Runolfur; Piñera, Celestino; Pippias, Maria; Prütz, Karl G; Ratkovic, Marina; Resić, Halima; Rodríguez Hernández, Aurelio; Rutkowski, Boleslaw; Spustová, Viera; Stel, Vianda S; Stojceva-Taneva, Olivera; Süleymanlar, Gültekin; Wanner, Christoph; Jager, Kitty J
This article provides a summary of the 2011 ERA-EDTA Registry Annual Report (available at www.era-edta-reg.org). Data on renal replacement therapy (RRT) for end-stage renal disease (ESRD) from national and regional renal registries in 30 countries in Europe and bordering the Mediterranean Sea were used. From 27 registries, individual patient data were received, whereas 17 registries contributed data in aggregated form. We present the incidence and prevalence of RRT, and renal transplant rates in 2011. In addition, survival probabilities and expected remaining lifetimes were calculated for those registries providing individual patient data. The overall unadjusted incidence rate of RRT in 2011 among all registries reporting to the ERA-EDTA Registry was 117 per million population (pmp) (n = 71.631). Incidence rates varied from 24 pmp in Ukraine to 238 pmp in Turkey. The overall unadjusted prevalence of RRT for ESRD on 31 December 2011 was 692 pmp (n = 425 824). The highest prevalence was reported by Portugal (1662 pmp) and the lowest by Ukraine (131 pmp). Among all registries, a total of 22 814 renal transplantations were performed (37 pmp). The highest overall transplant rate was reported from Spain, Cantabria (81 pmp), whereas the highest rate of living donor transplants was reported from Turkey (39 pmp). For patients who started RRT between 2002 and 2006, the unadjusted 5-year patient survival on RRT was 46.8% [95% confidence interval (CI) 46.6-47.0], and on dialysis 39.3% (95% CI 39.2-39.4). The unadjusted 5-year patient survival after the first renal transplantation performed between 2002 and 2006 was 86.7% (95% CI 86.2-87.2) for kidneys from deceased donors and 94.3% (95% CI 93.6-95.0) for kidneys from living donors.
Erekson, Elisabeth A; Iglesia, Cheryl B
Value-based care is quality health care delivered effectively and efficiently. Data registries were created to collect accurate information on patients with enough clinical information to allow for adequate risk adjustment of postoperative outcomes. Because most gynecologic procedures are elective and preference-sensitive, offering nonsurgical alternatives is an important quality measure. The Center for Medicare and Medicaid Services (CMS), in conjunction with mandates from the Affordable Care Act, passed by Congress in 2010, has developed several initiatives centered on the concept of paying for quality care, and 1 of the first CMS initiatives began with instituting payment penalties for hospital-acquired conditions, such as catheter-associated urinary tract infections, central line-associated bloodstream infections, and surgical site infections. Registries specific to gynecology include the Society for Assisted Reproductive Technology registry established in 1996; the FIBROID registry established in 1999; the Pelvic Floor Disorders Registry established by the American Urogynecologic Society in conjunction with other societies (2014); and the Society of Gynecologic Oncologists Clinical Outcomes Registry. Data from these registries can be used to critically analyze practice patterns, find best practices, and enact meaningful changes in systems and workflow. The ultimate goal of data registries and clinical support tools derived from big data is to access accurate and meaningful data from electronic records without repetitive chart review or the need for direct data entry. The most efficient operating systems will include open-access computer codes that abstract data, in compliance with privacy regulations, in real-time to provide information about our patients, their outcomes, and the quality of care that we deliver. Copyright © 2015. Published by Elsevier Inc.
E. A. Aseeva; A. I. Dubikov; L. A. Levasheva; G. M. Koilubaeva; M. K. Dzhetybaeva; V. T. Eralieva; E. R. Karimova; B. G. Isaeva; M. B. Kalykova; M. M. Saparbaeva; S. M. Isaeva; Zh. I. Omarbekova; E. S. Solovyeva; T M Reshetnyak; N G Klyukvina
The article presents the data of international registries and cohort studies of systemic lupus erythematosus (SLE). It justifies the purpose and objectives of the international registry of SLE patients, a Eurasian cohort (RENAISSANCE), which was launched in 2012 and amalgamated the leading rheumatology centers of the Russian Federation (V.A. Nasonova Research Institute of Rheumatology; Department of Rheumatology, Pacific State Medical University), Kazakhstan (Department of Rheumatology, S.D...
Brian J. McGrory, MD, MS
Conclusions: Revision burden has gradually decreased for hip replacements and has remained relatively constant for knee replacements both for the last 4 years and compared to historic controls. Knee revision burden was lower than hip revision burden for each period examined. Revision burden is one measure that may be helpful in following the effect of changes in surgical technique and implant design over time in registry populations and may be a helpful way to compare overall results between registries.
Lindoerfer, Doris; Mansmann, Ulrich
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
Gowri, S; Kannan, Sridharan
Evidence-based practice requires clinical trials to be performed. In India, if any clinical trial has to be performed, it has to be registered with clinical trial registry of India. Studies have shown that the report of clinical trials is poor in dentistry. Hence, the present study has been conducted to assess the type and trends of clinical trials being undertaken in dentistry in India over a span of 6 years. All the clinical trials which were registered with the Central Trial Registry of India (CTRI) (www.ctri.nic.in) from January 1, 2007 to March 3, 2014 were evaluated using the keyword "dental." Following information were collected for each of the clinical trials obtained from the search; number of centres (single center/multicentric), type of the institution undertaking the research (government/private/combined), study (observational/interventional), study design (randomized/single blinded/double-blinded), type of health condition, type of participants (healthy/patients), sponsors (academia/commercial), phase of clinical trial (Phase 1/2/3/4), publication details (published/not published), whether it was a postgraduate thesis or not and prospective or retrospective registration of clinical trials, methodological quality (method of randomization, allocation concealment). Descriptive statistics was used for analysis of various categories. Trend analysis was done to assess the changes over a period of time. The search yielded a total of 84 trials of which majority of them were single centered. Considering the study design more than half of the registered clinical trials were double-blinded (47/84 [56%]). With regard to the place of conducting a trial, most of the trials were planned to be performed in private hospitals (56/84 [66.7%]). Most (79/84, 94.1%) of the clinical trials were interventional while only 5/84 (5.9%) were observational. Majority (65/84, 77.4%) of the registered clinical trials were recruiting patients while the rest were being done in healthy
Mandl, Kenneth D; Edge, Stephen; Malone, Chad; Marsolo, Keith; Natter, Marc D
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.
Abajo Iglesias, Francisco J de; Feito Grande, Lydia; Júdez Gutiérrez, Javier; Martín Arribas, M Concepción; Terracini, Benedetto; Pàmpols Ros, Teresa; Campos Castelló, Jaime; Martín Uranga, Amelia; Abascal Alonso, Moisés; Herrera Carranza, Joaquín; Sánchez Martínez, María José
The clinical information stored in registries and records of different types is a fundamental tool for biomedical research. Up until just a few years ago, hardly any limitations existed on the creation and use of epidemiological registries or the use of information from pre-existing records for research purposes. This situation has changed substantially due mainly to the growing importance current laws place upon the safeguarding of the privacy and confidentiality of personal data. Although the legal framework is already quite explicit, a certain degree of leeway exists for ethical debate and prudence advice for the purpose of conducting valid, useful research with this information which will also respect the rights of the subjects and the laws in force. These guidelines deal with those aspects which have been considered relevant from an ethical standpoint in the handling of records and registries for research-related purposes, including not only the use but also the creation proper of the registries. A total of twenty-four recommendations are provided, grouped into ten sections: warranting of the creation of registry, organization and definition of responsibilities, scientific validity of the research project, ethical requirements of the collections of anonymous and anonymized data, ethical requirements of the registries including personal data, uses of medical records for research purposes, use of historical records of deceased individuals, contact with the research subjects, notification of results and review by a Research Ethics Committee.
Bellgard, Matthew I; Walker, Caroline E; Napier, Kathryn R; Lamont, Leanne; Hunter, Adam A; Render, Lee; Radochonski, Maciej; Pang, Jing; Pedrotti, Annette; Sullivan, David R; Kostner, Karam; Bishop, Warrick; George, Peter M; O'Brien, Richard C; Clifton, Peter M; Bockxmeer, Frank M Van; Nicholls, Stephen J; Hamilton-Craig, Ian; Dawkins, Hugh Js; Watts, Gerald F
Familial Hypercholesterolemia (FH) is the most common and serious monogenic disorder of lipoprotein metabolism that leads to premature coronary heart disease. There are over 65,000 people estimated to have FH in Australia, but many remain undiagnosed. Patients with FH are often under-treated, but with early detection, cascade family testing and adequate treatment, patient outcomes can improve. Patient registries are key tools for providing new information on FH and enhancing care worldwide. The development and design of the FH Australasia Network Registry is a crucial component in the comprehensive model of care for FH, which aims to provide a standardized, high-quality and cost-effective system of care that is likely to have the highest impact on patient outcomes. Informed by stakeholder engagement, the FH Australasia Network Registry was collaboratively developed by government, patient and clinical networks and research groups. The open-source, web-based Rare Disease Registry Framework was the architecture chosen for this registry owing to its open-source standards, modular design, interoperability, scalability and security features; all these are key components required to meet the ever changing clinical demands across regions. This paper provides a high level blueprint for other countries and jurisdictions to help inform and map out the critical features of an FH registry to meet their particular health system needs.
Couchoud, Cécile; Duman, Mirela; Frimat, Luc; Ryckelynck, Jean-Philippe; Verger, Christian
The 2 registries RDPLF and Rein are information systems concerning the treatment of end-stage renal disease. The aim of the study was to evaluate the representativeness and exhaustivity of the recorded cases as well as the accuracy of the informations in the 2 registries. Were included 375 adults, who started a first ESRD treatment between 1 January 2003 and 31 December 2003 in 7 French regions and were treated by peritoneal dialysis (PD) on the first day of the 4th month of ESRD treatment. 264 patients were identified found in both registries. Age, body mass index and albuminemia didn't differ significantly. The mean haemoglobin level was higher in RDPLF. There was a good concordance on sex, diabetes status but less so on primary renal disease and PD modalities. There were significant discrepancies between the two registries on the date of the first treatment. The analysis of outcomes (transplantation or death) showed 8 discrepancies related to the lack of recording of the event in one of the 2 registries. The good global agreement observed between Rein and RDPLF for the common data emphasizes the fiability and representativeness of the 2 structures and the synergy of their activities for a best evaluation of the quality of peritoneal dialysis. This study shows the necessity of a common patient identification that will allow us to maintain a good complementarity between the 2 registries and will favour common studies.
Ruiz-Laiglesia, F-J; Sánchez-Marteles, M; Pérez-Calvo, J-I; Formiga, F; Bartolomé-Satué, J A; Armengou-Arxé, A; López-Quirós, R; Pérez-Silvestre, J; Serrado-Iglesias, A; Montero-Pérez-Barquero, M
We sought to identify the comorbidities associated with heart failure (HF) in a non-selected cohort of patients, and its influence on mortality and rehospitalization. Data were obtained from the 'Registro de Insuficiencia Cardiaca' (RICA) of the Spanish Society of Internal Medicine. The registry includes patients prospectively admitted in Internal Medicine units for acute HF. Variables included in Charlson Index (ChI) were collected and analysed according to age, gender, left ventricular ejection fraction (LVEF) and Barthel Index. The primary end point of study was the likelihood of rehospitalization and death for any cause during the year after discharge. We included 2051 patients, mean age 78 and 53% females. LVEF was ⩾ 50% in 59.1% of the cohort. There was a high degree of dependency as measured by Barthel Index (14.8 % had an index ≤ 60). Mean ChI was 2.91 (SD ± 2.4). The most frequent comorbidities included in ChI were diabetes mellitus (44.3%), chronic renal impairment (30.8%) and chronic obstructive pulmonary disease (COPD) (27.4%). Age, myocardial infarction, peripheral artery disease, dementia, COPD, chronic renal impairment and diabetes with target-organ damage were all identified as independent prognostic factors for the combined end point of rehospitalization and death at 1 year. However, if multivariate analysis was done including ChI, only this remained as an independent prognostic factor for the combined end point (P < 0.001). HF is a comorbid condition. ChI is a simple and feasible tool for estimating the burden of comorbidities in such population. We believe that a holistic approach to HF would improve prognosis and the relief the pressure exerted on public health services. © The Author 2014. Published by Oxford University Press on behalf of the Association of Physicians. All rights reserved. For Permissions, please email: email@example.com.
Devane, Peter A; Wraighte, Philip J; Ong, David C G; Horne, J Geoffrey
Despite advances in primary THA, dislocation remains a common complication. In New Zealand (NZ), dislocations are reported to the National Joint Registry (NJR) only when prosthetic components are revised in the treatment of a dislocation. Closed reductions of dislocated hips are not recorded by the NJR. We compared the true dislocation rate for patients receiving primary THA in the Wellington region with the rate reported by the NZ NJR for the same group of patients. The NZ NJR identified 570 patients undergoing primary THA from January 1, 2008, to December 31, 2009, with addresses in the Wellington region. The mean age was 67.5 years (range, 27-96 years). The minimum followup was 2 years (mean, 3 years; range, 2-4 years). Six patients required revision of at least one component for dislocation. There was 100% agreement between the hospital database and the NJR. Using the NJR criteria of revision of any component as an end point, the dislocation rate in the Wellington region after primary THA was 1.05%. The hospital database identified a further eight patients who presented with a dislocation of their primary THA and underwent a closed reduction. These patients were not recorded by the NJR. The true rate of all dislocations, which includes closed reductions, was 2.46%. This article documents the discrepancy between the NZ NJR reported rate of revision for dislocation and the true rate of dislocation in primary THA. We recommend documentation of all dislocations by NJR in their database to allow more accurate comparisons between centers and research outcomes. Level IV, clinical research study. See Guidelines for Authors for a complete description of levels of evidence.
Full Text Available The GISEA registry is an independent database that was established by the Italian Group for the Study of Early Arthritis (GISEA in 2008, funded by the Italian Association of Rheumatic Patients (ANMAR - ONLUS. In line with the network’s epidemiological strategy, the initial protocol was designed to collect long-term follow-up data concerning patients with rheumatic diseases treated with biological agents in order to investigate the realworld characteristics in terms of disease activity, comorbidities and survival on treatment. We here describe the design and methodology used to collect patient data. Information concerning demographics, disease activity, treatment changes (including the reasons for changing and the duration of each therapy, concomitant therapies and adverse events is available to all the members of the study groups by means of a web-based interface that allows queries and the presentation of numerical data, as well as graphics to illustrate trends. Fourteen Italian rheumatology centres have contributed patients to the database which, at the time writing, includes 5145 patients (72% women with a mean age of 53 years (range 16-88. The initial diagnoses were rheumatoid arthritis (3494 patients, 67.9%, psoriatic arthritis (833, 16.2%, ankylosing spondylitis (493, 9.6%, undifferentiated spondylo-arthritides (307, 5.9%, enteropathic arthritis (14, 0.3% and spondylitis following reactive arthritis (4, 0.1%. These patients have been followed for up to 10 years, and 1927 (35.8% have been treated for at least three years. The biological treatments received include etanercept, infliximab, anakinra, adalimumab, abatacept, rituximab and tocilizumab. A total of 2926 adverse events have been observed, with 1171 patients (22% reporting at least one. Analysis of the accumulated data will provide insights into the critical early phase of the studied arthritides, and enable us to identify the clinical and laboratory profiles that may predict
Patarnello, Francesca; Recchia, Giuseppe
In the last decade regulators, payers and health care providers tried to react to three major problems in drug development and drug use in clinical practice: the pharmaceutical R&D productivity crisis, the immaturity of benefit-risk profile for several newly approved drugs and the overall impact on economic sustainability of reimbursing new high cost drugs in their systems. The potentiality of create a continuum between the evidence requirements relevant for registration, for reimbursement and for post authorization research is clear. All different parties involved, like regulators, HTA agencies, scientific communities and manufacturers, are working to improve the knowledge profile of new drugs in order to anticipate the patient access to innovation, limiting or preventing the clinical and economical risks deriving from an incomplete safety and effectiveness profile. The Italian example of "New Drugs AIFA Registries", with or without the application of risk sharing schemes (cost sharing, pay for performance, etc.), introduced a new process and increased the sensitivity on this topic. However this might probably represents only a partial answer to the problem of how to set up the governance of coverage with evidence, drug utilization monitoring, comparative effectiveness research, outcome research programs and may be how to link them to access, pricing and reimbursement. The step change in post authorization research could be to "integrate" different sources and stakeholders in a wider and continuous approach, in a well designed and inclusive "second generation" HTA approach, where all resources (competencies, data, funding) will concur to increase the evidence profile and reduce the risks, and where any "evidence generation approach" is really compliant with the standard and rules of best research practices.
Burisch, Johan; Gisbert, Javier P; Siegmund, Britta
Background: The "United Registries for Clinical Assessment and Research" (UR-CARE) database is an initiative of the European Crohn's and Colitis Organisation (ECCO) to facilitate daily patient care and research studies in inflammatory bowel disease (IBD). Herein, we sought to validate the databas...
Schendel, Diana E.; Bresnahan, Michaeline; Carter, Kim W.; Francis, Richard W.; Gissler, Mika; Grønborg, Therese K.; Gross, Raz; Gunnes, Nina; Hornig, Mady; Hultman, Christina M.; Langridge, Amanda; Lauritsen, Marlene B.; Leonard, Helen; Parner, Erik T.; Reichenberg, Abraham; Sandin, Sven; Sourander, Andre; Stoltenberg, Camilla; Suominen, Auli; Surén, Pål; Susser, Ezra
The International Collaboration for Autism Registry Epidemiology (iCARE) is the first multinational research consortium (Australia, Denmark, Finland, Israel, Norway, Sweden, USA) to promote research in autism geographical and temporal heterogeneity, phenotype, family and life course patterns, and etiology. iCARE devised solutions to challenges in…
Pedersen, Sidsel Arnspang; Schmidt, Sigrun Alba Johannesdottir; Klausen, Siri; Pottegård, Anton; Friis, Søren; Hölmich, Lisbet Rosenkrantz; Gaist, David
The nationwide Danish Cancer Registry and the Danish Melanoma Database both record data on melanoma for purposes of monitoring, quality assurance and research. However, the data quality of the Cancer Registry and the Melanoma Database has not been formally evaluated. We estimated the positive predictive value (PPV) of melanoma diagnosis for random samples of 200 patients from the Cancer Registry (n=200) and the Melanoma Database (n=200) during 2004-2014, using the Danish Pathology Registry as 'gold-standard' reference. We further validated tumor characteristics in the Cancer Registry and the Melanoma Database. Additionally, we estimated the PPV of in situ melanoma diagnoses in the Melanoma Database, and the sensitivity of melanoma diagnoses in 2004-2014. The PPVs of melanoma in the Cancer Registry and the Melanoma Database were 97% (95% CI, 94-99) and 100%. The sensitivity was 90% in the Cancer Registry and 77% in the Melanoma Database. The PPV of in situ melanomas in the Melanoma Database was 97% and the sensitivity was 56%. In the Melanoma Database, we observed PPVs of ulceration of 75% and Breslow thickness of 96%. The PPV of histologic subtypes varied between 87%-100% in the Cancer Registry and 93%-100% in the Melanoma Database. The PPVs for anatomical localization were 83%-95.0% in the Cancer Registry and 93%-100% in the Melanoma Database. The data quality in both the Cancer Registry and the Melanoma Database are high, supporting their use in epidemiologic studies.
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Cox, Nicholas; Brennan, Angela; Dinh, Diem; Brien, Rita; Cowie, Kath; Stub, Dion; Reid, Christopher M; Lefkovits, Jeffrey
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.
Blaha, M; Lanska, M; Tomsova, H; Zak, P
The WAA Registry allows detailed registration of hemapheresis data. Our center registers results there as well. We summarize our results as compared to those of the WAA Registry. Hemapheresis results are registered in the WAA Registry in Umea, Sweden. The patients' identity is protected by coding. General data (age, gender, weight, procedure, technique used etc.) or special data (occurrence and type of adverse reactions, health condition, quality of life etc.) are completed in a pre-defined form. In 2006-2016, we registered 7,927 hemaphereses in 956 patients in the WAA Registry; 40.4% in men and 59.6% in women aged 53±15years. There were mostly no significant differences in the individual interventions between our center and the WAA Registry; only the share of cascade filtrations/rheophereses is quite different (9 times higher in our center - 18.2% of interventions as compared to 2.1% in the WAA Registry). The share of photophereses (32.1%) is relatively high - due to cooperation with the bone marrow transplantations department. In regular quality assessment, one center usually does not have enough data and experience with some diseases or interventions; therefore, comparison with the WAA Registry results is valuable not only for the quality of interventions but also for side effect prevention. On the other hand, the advantage is that every center has its unique code and may work quite independently (quick and independent non-competitive assessments). Five-minute duration of registration is advantageous in a time-demanding work; moreover, the registration is free. Copyright © 2017 Elsevier Ltd. All rights reserved.
Mistry Pramod K
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.
Evangelista, Teresinha; Wood, Libby; Fernandez-Torron, Roberto; Williams, Maggie; Smith, Debbie; Lunt, Peter; Hudson, Judith; Norwood, Fiona; Orrell, Richard; Willis, Tracey; Hilton-Jones, David; Rafferty, Karen; Guglieri, Michela; Lochmüller, Hanns
Facioscapulohumeral dystrophy (FSHD) is a rare inherited neuromuscular disease estimated to affect 1/15,000 people. Through basic research, remarkable progress has been made towards the development of targeted therapies. Patient identification, through registries or other means is essential for trial-readiness. The UK FSHD Patient Registry is a patient initiated registry that collects standardised and internationally agreed dataset of self-reported clinical details combined with professionally verified genetic information. It includes four additional questionnaires to capture patient reported outcomes related to pain, quality of life and scapular fixation. Between 2013 and 2015, 518 patients registered 243 males, 241 females with a mean age of 47.8 years. Most of the patients have FSHD type 1 (91.7 %), and weakness of the facial (59.2 %) was the most prevalent symptom at onset, followed by shoulder-girdle muscles (53.3 %) and distal (22.45 %) or proximal lower limb weakness (14.8 %). 85.57 % patients were ambulant or ambulant with assistance at the time of registration, 7.9 % report respiratory insufficiency. The registry has demonstrated utility with the recruitment of patients for a natural history study of infantile onset FSHD, and the longitudinal analysis of patient-related outcomes will provide much-needed baseline information to power future trials. The internationally agreed core dataset enables national registries to participate in a "Global FSHD registry". We suggest that the registry's ability to interoperate with other large datasets will be instrumental for sharing and exploiting data globally.