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Sample records for intervention registry seventeenth

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

    Science.gov (United States)

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

    2018-01-25

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

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

    Science.gov (United States)

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

    2013-09-30

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

  3. Evaluation of algorithms for registry-based detection of acute myocardial infarction following percutaneous coronary intervention

    Directory of Open Access Journals (Sweden)

    Egholm G

    2016-10-01

    Full Text Available Gro Egholm,1,2,* Morten Madsen,2,* Troels Thim,1 Morten Schmidt,2,3 Evald Høj Christiansen,1 Hans Erik Bøtker,1 Michael Maeng1 1Department of Cardiology, 2Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, 3Department of Internal Medicine, Regional Hospital of Randers, Denmark *These authors contributed equally to this work Background: Registry-based monitoring of the safety and efficacy of interventions in patients with ischemic heart disease requires validated algorithms.Objective: We aimed to evaluate algorithms to identify acute myocardial infarction (AMI in the Danish National Patient Registry following percutaneous coronary intervention (PCI.Methods: Patients enrolled in clinical drug-eluting stent studies at the Department of Cardiology, Aarhus University Hospital, Denmark, from January 2006 to August 2012 were included. These patients were evaluated for ischemic events, including AMI, during follow-up using an end point committee adjudication of AMI as reference standard.Results: Of 5,719 included patients, 285 patients suffered AMI within a mean follow-up time of 3 years after stent implantation. An AMI discharge diagnosis (primary or secondary from any acute or elective admission had a sensitivity of 95%, a specificity of 93%, and a positive predictive value of 42%. Restriction to acute admissions decreased the sensitivity to 94% but increased the specificity to 98% and the positive predictive value to 73%. Further restriction to include only AMI as primary diagnosis from acute admissions decreased the sensitivity further to 82%, but increased the specificity to 99% and the positive predictive value to 81%. Restriction to patients admitted to hospitals with a coronary angiography catheterization laboratory increased the positive predictive value to 87%.Conclusion: Algorithms utilizing additional information from the Danish National Patient Registry yield different sensitivities, specificities, and predictive

  4. Seventeenth-century indivisibles revisited

    CERN Document Server

    2015-01-01

    The tremendous success of indivisibles methods in geometry in the seventeenth century, responds to a vast project: installation of infinity in mathematics. The pathways by the authors are very diverse, as are the characterizations of indivisibles, but there are significant factors of unity between the various doctrines of indivisible; the permanence of the language used by all authors is the strongest sign. These efforts do not lead to the stabilization of a mathematical theory (with principles or axioms, theorems respecting these first statements, followed by applications to a set of geometric situations), one must nevertheless admire the magnitude of the results obtained by these methods and highlights the rich relationships between them and integral calculus. The present book aims to be exhaustive since it analyzes the works of all major inventors of methods of indivisibles during the seventeenth century, from Kepler to Leibniz. It takes into account the rich existing literature usually devoted to a singl...

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

    International Nuclear Information System (INIS)

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

    2013-01-01

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

  6. Stroke Trials Registry

    Science.gov (United States)

    ... 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 ...

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

    Energy Technology Data Exchange (ETDEWEB)

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

    2013-12-15

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

  8. International Fetal Cardiac Intervention Registry: A Worldwide Collaborative Description and Preliminary Outcomes.

    Science.gov (United States)

    Moon-Grady, Anita J; Morris, Shaine A; Belfort, Michael; Chmait, Ramen; Dangel, Joanna; Devlieger, Roland; Emery, Stephen; Frommelt, Michele; Galindo, Alberto; Gelehrter, Sarah; Gembruch, Ulrich; Grinenco, Sofia; Habli, Mounira; Herberg, Ulrike; Jaeggi, Edgar; Kilby, Mark; Kontopoulos, Eftichia; Marantz, Pablo; Miller, Owen; Otaño, Lucas; Pedra, Carlos; Pedra, Simone; Pruetz, Jay; Quintero, Ruben; Ryan, Greg; Sharland, Gurleen; Simpson, John; Vlastos, Emanuel; Tworetzky, Wayne; Wilkins-Haug, Louise; Oepkes, Dick

    2015-07-28

    Invasive fetal cardiac intervention (FCI) has been reported in single-institution series, promoting technical and physiologic success. This study describes the creation of an international registry of cases presenting for FCI, intended to compile technical and outcome data from a multicenter cohort. For this initial analysis, the entire database of the International Fetal Cardiac Intervention Registry (IFCIR) was queried for details of diagnoses, procedures, and outcomes. Maternal-fetal dyads from January 2001 through June 2014 were included. Eighteen institutions submitted data by data harvest. Of 370 cases entered, 245 underwent FCI: 100 aortic valvuloplasties from a previous single-center report (excluded from additional reporting here), an additional 86 aortic and 16 pulmonary valvuloplasties, 37 atrial septal cases, and 6 unclassified cases. FCI did not appear to affect overall survival to hospital discharge. Among live-born infants with a fetal diagnosis of aortic stenosis/evolving hypoplastic left heart syndrome, more than twice as many were discharged with biventricular circulation after successful FCI versus those meeting institutional criteria but without any or successful FCI (42.8% vs. 19.4%, respectively). When fetal deaths were counted as treatment failures, the percentages were similar: biventricular circulation at discharge was 31.3% versus 18.5% for those discharged with univentricular palliation. Survival to discharge for live-born fetuses with atrial restriction was similar to that of those undergoing technically successful versus unsuccessful FCI (63.6% vs. 46.7%, respectively), although criteria for diagnosis were nonuniform. We describe the contents of the IFCIR and present post-natal data to suggest potential benefit to fetal therapy among pregnancies considered for possible intervention and support proposals for additional work. Copyright © 2015 American College of Cardiology Foundation. Published by Elsevier Inc. All rights reserved.

  9. Supported high-risk percutaneous coronary intervention with the impella 2.5 device the europella registry

    NARCIS (Netherlands)

    Sjauw, Krischan D.; Konorza, Thomas; Erbel, Raimund; Danna, Paolo L.; Viecca, Maurizio; Minden, Hans-Heinrich; Butter, Christian; Engstrøm, Thomas; Hassager, Christian; Machado, Francisco P.; Pedrazzini, Giovanni; Wagner, Daniel R.; Schamberger, Rainer; Kerber, Sebastian; Mathey, Detlef G.; Schofer, Joachim; Engström, Annemarie E.; Henriques, Jose P. S.

    2009-01-01

    OBJECTIVES: This retrospective multicenter registry evaluated the safety and feasibility of left ventricular (LV) support with the Impella 2.5 (Abiomed Europe GmbH, Aachen, Germany) during high-risk percutaneous coronary intervention (PCI). BACKGROUND: Patients with complex or high-risk coronary

  10. Improving Guideline Compliance in Australia With a National Percutaneous Coronary Intervention Outcomes Registry.

    Science.gov (United States)

    Eccleston, David; Horrigan, Mark; Rafter, Tony; Holt, Geoffrey; Worthley, Stephen G; Sage, Peter; Whelan, Alan; Reid, Christopher; Thompson, Peter L

    2017-12-01

    Secondary prevention strategies after percutaneous coronary intervention (PCI) include statins and dual anti-platelet therapy, however there are significant gaps between guidelines and practice. Contemporary PCI practice requires comprehensive data collection to allow dynamic auditing and benchmarking of key performance and safety indices. Genesis HeartCare is Australia's largest collaborative venture of cardiologists, practising at over 40 public and private hospitals. We hypothesised that measurement and local reporting of data would improve patient outcomes through improving compliance with guideline therapies. Real-time benchmarking via a national clinical quality and outcomes register, the Genesis Cardiovascular Outcomes Registry (GCOR-PCI). GCOR-PCI prospectively collected clinical, procedural, medication and outcomes data for 6720 consecutive patients undergoing PCI from 10 private hospitals across Australia. Key performance outcomes benchmarked against the aggregated study cohort and international standards were reported to individual sites. The main outcome measure was compliance with guideline medications (statins, anti-platelet agents). Early data identified specific practice patterns associated with lower rates of statin therapy post-PCI, which led to changes in practice. Between the first and latest year of data collection there was significant improvement in the rates of statin therapy at discharge (92.1 vs. 94.4% p<0.03) and 12 months post-PCI (87.0 vs. 92.2% p<0.001) and of antiplatelet therapy at 12 months (90.7 vs. 94.3% p<0.001). This large-scale collaboration provides a platform for the development of quality improvement initiatives. Establishment of this clinical quality registry improved patient care by identifying and monitoring gaps in delivery of appropriate therapies, driving key practice change. Copyright © 2017 Australian and New Zealand Society of Cardiac and Thoracic Surgeons (ANZSCTS) and the Cardiac Society of Australia and New

  11. Transradial percutaneous coronary interventions using sheathless guiding catheters: a multicenter registry.

    Science.gov (United States)

    Sciahbasi, Alessandro; Mancone, Massimo; Cortese, Bernardo; Pendenza, Gianluca; Romagnoli, Enrico; Fischetti, Dionigi; Tomassini, Francesco; Sardella, Gennaro; Lioy, Ernesto

    2011-10-01

    Transradial approach (TRA) for percutaneous coronary interventions (PCIs) is a common alternative to transfemoral approach associated with lower complications. However, a limitation of TRA is the use of large caliber guiding catheters due to the small size of the radial artery. The sheathless guiding catheter system that is in diameter 1-2 French (Fr) smaller than the corresponding introducer sheath may overcome these difficulties. From January 2010 through December 2010 in 5 Italian high-volume hospitals, 213 consecutive patients who underwent TRA-PCIs using the sheathless Eaucath guiding catheter system because of small radial artery caliber (Group 1) or undergoing bifurcation PCIs (Group 2) were enrolled in this registry. In patients of Group 1 (n = 79), a 6.5-Fr sheathless guiding catheter was employed, whereas in patients of Group 2 (n = 134) a 7.5 Fr was used. Among the 213 patients enrolled, 270 vessels were treated for 316 lesions. No procedures required conversion to a conventional guiding catheter system. There were significantly more female patients in Group 1, and they were, older, shorter, and thinner than patients in Group 2. No cases of major vascular complications were observed in either groups. During procedures, adjunctive devices employed included intravascular ultrasound, thrombectomy catheters, and distal protection systems. The use of the sheathless guiding catheter system is feasible for TRA-PCIs in case of small radial artery caliber or intended coronary bifurcation intervention. ©2011, Wiley Periodicals, Inc.

  12. Recent trends in Australian percutaneous coronary intervention practice: insights from the Melbourne Interventional Group registry.

    Science.gov (United States)

    Yan, Bryan P; Ajani, Andrew E; Clark, David J; Duffy, Stephen J; Andrianopoulos, Nick; Brennan, Angela L; Loane, Philippa; Reid, Christopher M

    2011-08-01

    To evaluate percutaneous coronary intervention (PCI) practice trends and 12-month outcomes in Australia in the era of drug-eluting stents (DES). Prospective study of consecutive patients undergoing 9204 PCIs between 1 April 2004 and 31 March 2008 at seven Victorian public hospitals. Temporal trends in baseline characteristics and in-hospital and 12-month clinical outcomes including death, myocardial infarction (MI), target vessel revascularisation (TVR) and composite major adverse cardiac events (MACE), from year to year. Between 2004-2005 and 2007-2008, the mean age of patients undergoing PCI was stable (65 ± 12 years), and comorbidities such as hypertension, hyperlipidaemia, peripheral arterial disease and stroke increased (P < 0.05). There were fewer elective and more urgent PCIs, especially for MI < 24 hours (17.6% in 2004-2005 to 27.2% in 2007-2008, P < 0.01). Overall stent use remained high (mean, 94.6%), but use of DES declined steadily (53.9% in 2004-2005 to 32.0% in 2007-2008, P < 0.01), despite increases in complex lesions. Planned clopidogrel therapy of ≥ 12 months after insertion of DES increased from 54.7% in 2004-2005 to 98.0% in 2007-2008 (P < 0.01). The overall procedural success rate was high (mean, 95.9%), and 12-month rates of mortality (3.8%), MI (4.8%), TVR (6.8%) and stent thrombosis (1.8%) remained low. Selective use of DES was an independent predictor of freedom from MACE at 12 months (odds ratio, 0.68; 95% CI, 0.56-0.81). Use of DES declined steadily from 2004-2005 to 2007-2008, despite increasing patient risk profile and lesion complexity. Procedural success remained high and 12-month adverse outcomes remained low, with increasing use of prolonged dual antiplatelet therapy.

  13. Supported high-risk percutaneous coronary intervention with the Impella 2.5 device the Europella registry

    DEFF Research Database (Denmark)

    Sjauw, Krischan D; Konorza, Thomas; Erbel, Raimund

    2009-01-01

    OBJECTIVES: This retrospective multicenter registry evaluated the safety and feasibility of left ventricular (LV) support with the Impella 2.5 (Abiomed Europe GmbH, Aachen, Germany) during high-risk percutaneous coronary intervention (PCI). BACKGROUND: Patients with complex or high-risk coronary...... with poor LV function. The Impella 2.5, a percutaneous implantable LV assist device, might be a superior alternative to the traditionally used intra-aortic balloon pump. METHODS: The Europella registry included 144 consecutive patients who underwent a high-risk PCI. Safety and feasibility end points.......5%. Rates of myocardial infarction, stroke, bleeding requiring transfusion/surgery, and vascular complications at 30 days were 0%, 0.7%, 6.2%, and 4.0%, respectively. CONCLUSIONS: This large multicenter registry supports the safety, feasibility, and potential usefulness of hemodynamic support with Impella 2...

  14. Benefits of an automatic patient dose registry system for interventional radiology and cardiology at five hospitals of the Madrid area

    International Nuclear Information System (INIS)

    Fernandez-Soto, J.M.; Vano, E.; Sanchez, R.M.; Ten, J.I.; Espana, M.; Pifarre, X.

    2015-01-01

    The purpose of this article is to present the results of connecting the interventional radiology and cardiology laboratories of five university hospitals to a unique server using an automatic patient dose registry system (Dose On Line for Interventional Radiology, DOLIR) developed in-house, and to evaluate its feasibility more than a year after its introduction. The system receives and stores demographic and dosimetric parameters included in the MPPS DICOM objects sent by the modalities to a database. A web service provides a graphical interface to analyse the information received. During 2013, the system processed 10 788 procedures (6874 cardiac, 2906 vascular and 1008 neuro interventional). The percentages of patients requiring clinical follow-up due to potential tissue reactions before and after the use of DOLIR are presented. The system allowed users to verify in real-time, if diagnostic (or interventional) reference levels are fulfilled. (authors)

  15. Challenges of implementation and implementation research: Learning from an intervention study designed to improve tumor registry reporting.

    Science.gov (United States)

    McAlearney, Ann Scheck; Walker, Daniel M; Livaudais-Toman, Jennifer; Parides, Michael; Bickell, Nina A

    2016-01-01

    Implementation of interventions designed to improve the quality of medical care often proceeds differently from what is planned. Improving existing conceptual models to better understand the sources of these differences can help future projects avoid these pitfalls and achieve desired effectiveness. To inform an adaptation of an existing theoretical model, we examined unanticipated changes that occurred in an intervention designed to improve reporting of adjuvant therapies for breast cancer patients at a large, urban academic medical center. Guided by the complex innovation implementation conceptual framework, our study team observed and evaluated the implementation of an intervention designed to improve reporting to a tumor registry. Findings were assessed against the conceptual framework to identify boundary conditions and modifications that could improve implementation effectiveness. The intervention successfully increased identification of the managing medical oncologist and treatment reporting. During implementation, however, unexpected external challenges including hospital acquisitions of community practices and practices' responses to government incentives to purchase electronic medical record systems led to unanticipated changes and associated threats to implementation. We present a revised conceptual model that incorporates the sources of these unanticipated challenges. This report of our experience highlights the importance of monitoring implementation over time and accounting for changes that affect both implementation and measurement of intervention impact. In this article, we use our study to examine the challenges of implementation research in health care, and our experience can help future implementation efforts.

  16. Challenges of implementation and implementation research: Learning from an intervention study designed to improve tumor registry reporting

    Directory of Open Access Journals (Sweden)

    Ann Scheck McAlearney

    2016-08-01

    Full Text Available Objectives: Implementation of interventions designed to improve the quality of medical care often proceeds differently from what is planned. Improving existing conceptual models to better understand the sources of these differences can help future projects avoid these pitfalls and achieve desired effectiveness. To inform an adaptation of an existing theoretical model, we examined unanticipated changes that occurred in an intervention designed to improve reporting of adjuvant therapies for breast cancer patients at a large, urban academic medical center. Methods: Guided by the complex innovation implementation conceptual framework, our study team observed and evaluated the implementation of an intervention designed to improve reporting to a tumor registry. Findings were assessed against the conceptual framework to identify boundary conditions and modifications that could improve implementation effectiveness. Results: The intervention successfully increased identification of the managing medical oncologist and treatment reporting. During implementation, however, unexpected external challenges including hospital acquisitions of community practices and practices’ responses to government incentives to purchase electronic medical record systems led to unanticipated changes and associated threats to implementation. We present a revised conceptual model that incorporates the sources of these unanticipated challenges. Conclusion: This report of our experience highlights the importance of monitoring implementation over time and accounting for changes that affect both implementation and measurement of intervention impact. In this article, we use our study to examine the challenges of implementation research in health care, and our experience can help future implementation efforts.

  17. Supported high-risk percutaneous coronary intervention with the Impella 2.5 device the Europella registry.

    Science.gov (United States)

    Sjauw, Krischan D; Konorza, Thomas; Erbel, Raimund; Danna, Paolo L; Viecca, Maurizio; Minden, Hans-Heinrich; Butter, Christian; Engstrøm, Thomas; Hassager, Christian; Machado, Francisco P; Pedrazzini, Giovanni; Wagner, Daniel R; Schamberger, Rainer; Kerber, Sebastian; Mathey, Detlef G; Schofer, Joachim; Engström, Annemarie E; Henriques, Jose P S

    2009-12-15

    This retrospective multicenter registry evaluated the safety and feasibility of left ventricular (LV) support with the Impella 2.5 (Abiomed Europe GmbH, Aachen, Germany) during high-risk percutaneous coronary intervention (PCI). Patients with complex or high-risk coronary lesions, such as last remaining vessel or left main lesions, are increasingly being treated with PCI. Because periprocedural hemodynamic compromise and complications might occur rapidly, many of these high-risk procedures are being performed with mechanical cardiac assistance, particularly in patients with poor LV function. The Impella 2.5, a percutaneous implantable LV assist device, might be a superior alternative to the traditionally used intra-aortic balloon pump. The Europella registry included 144 consecutive patients who underwent a high-risk PCI. Safety and feasibility end points included incidence of 30-day adverse events and successful device function. Patients were older (62% >70 years of age), 54% had an LV ejection fraction < or = 30%, and the prevalence of comorbid conditions was high. Mean European System for Cardiac Operative Risk Evaluation score was 8.2 (SD 3.4), and 43% of the patients were refused for coronary artery bypass grafting. A PCI was considered high-risk due to left main disease, last remaining vessel disease, multivessel coronary artery disease, and low LV function in 53%, 17%, 81%, and 35% of the cases, respectively. Mortality at 30 days was 5.5%. Rates of myocardial infarction, stroke, bleeding requiring transfusion/surgery, and vascular complications at 30 days were 0%, 0.7%, 6.2%, and 4.0%, respectively. This large multicenter registry supports the safety, feasibility, and potential usefulness of hemodynamic support with Impella 2.5 in high-risk PCI.

  18. Use of a registry-generated audit, feedback, and patient reminder intervention in an internal medicine resident clinic--a randomized trial.

    Science.gov (United States)

    Thomas, Kris G; Thomas, Matthew R; Stroebel, Robert J; McDonald, Furman S; Hanson, Gregory J; Naessens, James M; Huschka, Todd R; Kolars, Joseph C

    2007-12-01

    Disease registries, audit and feedback, and clinical reminders have been reported to improve care processes. To assess the effects of a registry-generated audit, feedback, and patient reminder intervention on diabetes care. Randomized controlled trial conducted in a resident continuity clinic during the 2003-2004 academic year. Seventy-eight categorical Internal Medicine residents caring for 483 diabetic patients participated. Residents randomized to the intervention (n = 39) received instruction on diabetes registry use; quarterly performance audit, feedback, and written reports identifying patients needing care; and had letters sent quarterly to patients needing hemoglobin A1c or cholesterol testing. Residents randomized to the control group (n = 39) received usual clinic education. Hemoglobin A1c and lipid monitoring, and the achievement of intermediate clinical outcomes (hemoglobin A1c audit, feedback, and patient reminder intervention in a resident continuity clinic modestly improved diabetes care processes, but did not influence intermediate clinical outcomes.

  19. Prospective registry of symptomatic severe aortic stenosis in octogenarians: a need for intervention.

    Science.gov (United States)

    Martínez-Sellés, M; Gómez Doblas, J J; Carro Hevia, A; García de la Villa, B; Ferreira-González, I; Alonso Tello, A; Andión Ogando, R; Ripoll Vera, T; Arribas Jiménez, A; Carrillo, P; Rodríguez Pascual, C; Casares i Romeva, M; Borras, X; Cornide, L; López-Palop, R

    2014-06-01

    To study the factors associated with choice of therapy and prognosis in octogenarians with severe symptomatic aortic stenosis (AS). Prospective, observational, multicenter registry. Centralized follow-up included survival status and, if possible, mode of death and Katz index. Transnational registry in Spain. We included 928 patients aged ≥80 years with severe symptomatic AS. Aortic-valve replacement (AVR), transcatheter aortic-valve implantation (TAVI) or conservative therapy. All-cause death. Mean age was 84.2 ± 3.5 years, and only 49.0% were independent (Katz index A). The most frequent planned management was conservative therapy in 423 (46%) patients, followed by TAVI in 261 (28%) and AVR in 244 (26%). The main reason against recommending AVR in 684 patients was high surgical risk [322 (47.1%)], other medical motives [193 (28.2%)], patient refusal [134 (19.6%)] and family refusal in the case of incompetent patients [35 (5.1%)]. The mean time from treatment decision to AVR was 4.8 ± 4.6 months and to TAVI 2.1 ± 3.2 months, P treatment: TAVI Hazard ratio (HR) 0.68 (95% confidence interval [CI] 0.49-0.93; P = 0.016) and AVR HR 0.56 (95% CI 0.39-0.8; P = 0.002). Octogenarians with symptomatic severe AS are frequently managed conservatively. Planned conservative management is associated with a poor prognosis. © 2013 The Association for the Publication of the Journal of Internal Medicine.

  20. World nuclear fuel market. Seventeenth annual meeting

    International Nuclear Information System (INIS)

    Anon.

    1990-01-01

    The papers presented at the seventeenth World Nuclear Fuels Market meeting are cataloged individually. This volume includes information on the following areas of interest: historical and current aspects of the uranium and plutonium market with respect to supply and demand, pricing, spot market purchasing, and other market phenomena; impact of reprocessing and recycling uranium, plutonium, and mixed oxide fuels; role of individual countries in the market: Hungary, Germany, the Soviet Union, Czechoslovakia, France, and the US; the impact of public opinion and radioactive waste management on the nuclear industry, and a debate regarding long term versus short term contracting by electric utilities for uranium and enrichment services

  1. Astrology in seventeenth-century Peru.

    Science.gov (United States)

    Brosseder, Claudia

    2010-06-01

    This article discusses three aspects of the history of astrology in seventeenth-century Peru that are of larger interest for the history of science in Latin America: Creole concerns about indigenous idolatry, the impact of the Inquisition on natural philosophy, and communication between scholars within the Spanish colonies and the transatlantic world. Drawing mainly on the scholars Antonio de la Calancha, Juan de Figueroa, and Ruiz de Lozano, along with several Jesuits, the article analyzes how natural and medical astrology took shape in Peru and how they fostered astronomical investigations of the southern skies. While natural and medical astrology, showing New and Old World influences, oscillated between orthodoxy and heterodoxy, and between scholasticism and new science, judicial astrology remained undeveloped. Toward the end of the seventeenth century the discourse about astrology took an unexpected turn, reflecting a newly invigorated moral and Christian reading of the heavens that was in part a response to a deep-rooted dissatisfaction with the failure of the extirpation of idolatry campaigns. Inscribing divine and cardinal virtues, the Virgin Mary, Christian saints, and Greco-Roman allegories into the heavens was considered a way to finally solve the problem of idolatry and to convey Creole greatness.

  2. Walking the talk: the need for a trial registry for development interventions

    DEFF Research Database (Denmark)

    Rasmussen, Ole Dahl; Malchow-Møller, Nikolaj; Andersen, Thomas Barnebeck

    2011-01-01

    Recent advances in the use of randomised control trials to evaluate the effect of development interventions promise to enhance our knowledge of what works and why. A core argument supporting randomised studies is the claim that they have high internal validity. The authors argue that this claim...

  3. SURgical interventions with FEIBA (SURF): international registry of surgery in haemophilia patients with inhibitory antibodies.

    Science.gov (United States)

    Négrier, C; Lienhart, A; Numerof, R; Stephens, D; Wong, W Y; Baghaei, F; Yee, T T

    2013-05-01

    Factor VIII Inhibitor Bypassing Activity (FEIBA) can effectively achieve haemostasis in haemophilia patients with inhibitors. Further evaluation of FEIBA in surgical settings is of significant interest considering the relatively limited prospective data published to date. The aim of the study is to evaluate the perioperative efficacy and safety of FEIBA in haemophilia patients with inhibitors. Haemophilia patients with inhibitors who underwent surgical procedures and received FEIBA for perioperative haemostatic control were prospectively enrolled in an open-label, noninterventional, postauthorization study [SURgical interventions with FEIBA (SURF)]. Outcome measures included haemostatic efficacy, safety, FEIBA exposure and blood loss associated with the perioperative use of FEIBA. Thirty-five surgical procedures were performed at 19 centres worldwide in patients with congenital haemophilia A, congenital haemophilia B, or acquired haemophilia A. Haemorrhagic risk was severe in 37.1% (13 of 35) of the procedures, moderate in 25.7% (9 of 35) and mild in 37.1% (13 of 35). One moderate risk surgery was excluded from the efficacy analyses because it did not meet all protocol requirements. Haemostasis was judged to be 'good' or 'excellent' in 91.2% (31 of 34) of surgical procedures and 'fair' in 8.8% (3 of 34). Among the 12 adverse events, three were serious adverse events (SAEs), two of which were unrelated to FEIBA therapy; one SAE, a clot in an arteriovenous fistula, was deemed to be possibly related to therapy. This prospective investigation confirms that FEIBA can be safely and effectively used when performing surgical procedures in haemophilia patients with inhibitors. © 2013 Blackwell Publishing Ltd.

  4. Complex Coronary Interventions with the Novel Mozec™ CTO Balloon: The MOZART Registry.

    Science.gov (United States)

    Lupi, Alessandro; Rognoni, Andrea; Schaffer, Alon; Secco, Gioel G; Bongo, Angelo S

    2015-01-01

    Mozec™ CTO is a novel semicompliant rapid-exchange PTCA balloon catheter with specific features dedicated to treat complex coronary lesions like chronic total occlusions (CTOs). However, no data have been reported about the performance of this device in an all-comers population with complex coronary lesions. We evaluated the safety and success rate of Mozec™ CTO balloon in 41 consecutive patients with chronic stable angina and complex coronary lesions (15 severe calcified coronary stenoses, 15 bifurcation lesions with planned two-stent intervention, and 11 CTOs). Safety was assessed reporting the balloon burst rate after inflation exceeding the rated burst pressure (RBP) according to the manufacturer's reference table. Success was defined as the possibility to advance the device further the target lesion. The Mozec™ CTO balloon showed an excellent performance with a 93.3% success in crossing tight and severely calcified lesions (14/15 pts), a 93.3% success in engaging jailed side branches after stent deployment across bifurcations (14/15 pts), and a 90.9% success in crossing CTO lesions (10/11 pts). The burst rate at RBP of the Mozec™ CTO balloon was 6.7% (1/15 balloons) in the tight and severely calcified lesions, 6.7% (1/15 balloons) when dilating jailed vessels, and 9.1% (1/11 balloons) in CTOs. The novel Mozec™ CTO balloon dilatation catheter showed promising results when employed to treat complex lesions in an all-comers population. Further studies should clarify if this kind of balloon might reduce the need of more costly devices like over-the-wire balloons and microcatheters for complex lesions treatment.

  5. Outcomes of Chronic Total Occlusion Percutaneous Coronary Intervention in Patients With Diabetes: Insights From the OPEN CTO Registry.

    Science.gov (United States)

    Salisbury, Adam C; Sapontis, James; Grantham, J Aaron; Qintar, Mohammed; Gosch, Kensey L; Lombardi, William; Karmpaliotis, Dimitri; Moses, Jeffrey; Cohen, David J; Spertus, John A; Kosiborod, Mikhail

    2017-11-13

    Few studies have evaluated the relationship of diabetes with technical success and periprocedural complications, and no studies have compared patient-reported health status after chronic total occlusion (CTO) percutaneous coronary intervention (PCI) in patients with and without diabetes. CTOs are more common in patients with diabetes, yet CTO PCI is less often attempted in patients with diabetes than in patients without. The association between diabetes and health status after CTO PCI is unknown. In the 12-center OPEN-CTO PCI registry (Outcomes, Patient Health Status, and Efficiency in Chronic Total Occlusion Registry), patients with and without diabetes were assessed for technical success, periprocedural complications, and health status over 1 year following CTO PCI using the Seattle Angina Questionnaire and the Rose Dyspnea Scale. Hierarchical modified Poisson regression was used to examine the independent association between diabetes and technical success, and hierarchical multivariable linear regression was used to assess the association between diabetes and follow-up health status. Diabetes was common (41.2%) and associated with a lower crude rate of technical success (83.5% vs. 88.1%; p = 0.04). After adjustment, there was no significant difference between diabetic and nondiabetic patients (relative risk: 0.96, 95% confidence interval: 0.91 to 1.01). There were no significant differences in complication rates between patients with and without diabetes. Angina burden, quality of life, and overall health status scores were similar between diabetic and nondiabetic patients over 1 year. Although technical success was lower in patients with diabetes, this reflected lower success among patients with prior bypass surgery, without any significant difference in success rate after adjusting for prior bypass and disease complexity. CTO PCI complication rates are similar in diabetic and nondiabetic patients, and symptom improvement following CTO PCI is robust

  6. Contemporary Use of Laser During Percutaneous Coronary Interventions: Insights from the Laser Veterans Affairs (LAVA) Multicenter Registry.

    Science.gov (United States)

    Karacsonyi, Judit; Armstrong, Ehrin J; Truong, Huu Tam D; Tsuda, Ryan; Kokkinidis, Damianos G; Martinez-Parachini, Jose Roberto; Alame, Aya J; Danek, Barbara A; Karatasakis, Aris; Roesle, Michele; Khalili, Houman; Ungi, Imre; Banerjee, Subhash; Brilakis, Emmanouil S; Rangan, Bavana V

    2018-03-15

    The contemporary use and outcomes of excimer laser coronary atherectomy (ELCA) in percutaneous coronary intervention (PCI) are not well described. We examined the baseline clinical and angiographic characteristics and procedural outcomes of 130 target lesions in 121 consecutive PCIs (n = 116 patients) in which ELCA was performed at three United States Department of Veterans Affairs (VA) medical centers between 2008 and 2016. Mean age was 68.5 ± 9 years and 97% of the patients were men. Patients had high prevalence of diabetes mellitus (63%), prior coronary artery bypass graft surgery (41%), and prior myocardial infarction (60%). The most common target vessel was the left anterior descending (32%), followed by the right coronary artery (30%), circumflex artery (20%), and saphenous vein graft (12%). The target lesions were highly complex, with moderate/severe calcification in 62% and in-stent restenosis in 37%. The most common indication for ELCA was balloon-uncrossable lesions (43.8%), followed by balloon-undilatable lesions (40.8%) and thrombotic lesions (12.3%). Use of ELCA was associated with high technical success rate (90.0%) and procedural success rate (88.8%), and low major adverse cardiac event (MACE) rate (3.45%). Mean procedure time was 120 min (interquartile range [IQR], 81-191 min), air kerma radiation dose was 2.76 Gy (IQR, 1.32-5.01 Gy), and contrast volume was 273 mL (IQR, 201-362 mL). In a contemporary multicenter United States registry, ELCA was commonly used in highly complex lesions and was associated with high technical and procedural success rates and low incidence of MACE.

  7. Seventeenth workshop on geothermal reservoir engineering: Proceedings

    Energy Technology Data Exchange (ETDEWEB)

    Ramey, H.J. Jr.; Kruger, P.; Miller, F.G.; Horne, R.N.; Brigham, W.E.; Cook, J.W. (Stanford Geothermal Program)

    1992-01-31

    PREFACE The Seventeenth Workshop on Geothermal Reservoir Engineering was held at Stanford University on January 29-31, 1992. There were one hundred sixteen registered participants which equaled the attendance last year. Participants were from seven foreign countries: Italy, Japan, United Kingdom, France, Belgium, Mexico and New Zealand. Performance of many geothermal fields outside the United States was described in the papers. The Workshop Banquet Speaker was Dr. Raffaele Cataldi. Dr. Cataldi gave a talk on the highlights of his geothermal career. The Stanford Geothermal Program Reservoir Engineering Award for Excellence in Development of Geothermal Energy was awarded to Dr. Cataldi. Dr. Frank Miller presented the award at the banquet. Thirty-eight papers were presented at the Workshop with two papers submitted for publication only. Dr. Roland Horne opened the meeting and the key note speaker was J.E. ''Ted'' Mock who discussed the DOE Geothermal R. & D. Program. The talk focused on aiding long-term, cost effective private resource development. Technical papers were organized in twelve sessions concerning: geochemistry, hot dry rock, injection, geysers, modeling, and reservoir mechanics. Session chairmen were major contributors to the program and we thank: Sabodh Garg., Jim Lovekin, Jim Combs, Ben Barker, Marcel Lippmann, Glenn Horton, Steve Enedy, and John Counsil. The Workshop was organized by the Stanford Geothermal Program faculty, staff, and graduate students. We wish to thank Pat Ota, Ted Sumida, and Terri A. Ramey who also produces the Proceedings Volumes for publication. We owe a great deal of thanks to our students who operate audiovisual equipment and to Francois Groff who coordinated the meeting arrangements for the Workshop. Henry J. Ramey, Jr. Roland N. Horne Frank G. Miller Paul Kruger William E. Brigham Jean W. Cook -vii

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

    Science.gov (United States)

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

    2015-11-01

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

  9. Time-Course Reduction in Patient Exposure to Radiation From Coronary Interventional Procedures: The Greater Paris Area Percutaneous Coronary Intervention Registry.

    Science.gov (United States)

    Georges, Jean-Louis; Karam, Nicole; Tafflet, Muriel; Livarek, Bernard; Bataille, Sophie; Loyeau, Aurélie; Mapouata, Mireille; Benamer, Hakim; Caussin, Christophe; Garot, Philippe; Varenne, Olivier; Barbou, Franck; Teiger, Emmanuel; Funck, François; Karrillon, Gaëtan; Lambert, Yves; Spaulding, Christian; Jouven, Xavier

    2017-08-01

    The frequency of complex percutaneous coronary interventions (PCIs) has increased in the last few years, with a growing concern on the radiation dose received by the patients. Multicenter data from large unselected populations on patients' radiation doses during coronary angiography (CA) and PCI and temporal trends are lacking. This study sought to evaluate the temporal trends in patients' exposure to radiation from CA and PCI. Data were taken from the CARDIO-ARSIF registry that prospectively collects data on all CAs and PCIs performed in the 36 catheterization laboratories in the Greater Paris Area, the most populated regions in France with about 12 million inhabitants. Kerma area product and Fluoroscopy time from 152 684 consecutive CAs and 103 177 PCIs performed between 2009 and 2013 were analyzed. A continuous trend for a decrease in median [interquartile range] Kerma area product was observed, from 33 [19-55] Gy cm 2 in 2009 to 27 [16-44] Gy cm 2 in 2013 for CA ( P <0.0001), and from 73 [41-125] to 55 [31-91] Gy cm 2 for PCI ( P <0.0001). Time-course differences in Kerma area product remained highly significant after adjustment on Fluoroscopy time, PCI procedure complexity, change of x-ray equipment, and other patient- and procedure-related covariates. In a large patient population, a steady temporal decrease in patient radiation exposure during CA and PCI was noted between 2009 and 2013. Kerma area product reduction was consistent in all types of procedure and was independent of patient-related factors and PCI procedure complexity. © 2017 American Heart Association, Inc.

  10. Characteristics and safety of interventions and procedures performed during catheterisation of patients with congenital heart disease: early report from the national cardiovascular data registry.

    Science.gov (United States)

    Holzer, Ralf; Beekman, Robert; Benson, Lee; Bergersen, Lisa; Jayaram, Natalie; Jenkins, Kathy; Kennedy, Kevin; Moore, John; Ringel, Richard; Rome, Jonathan; Vincent, Robert; Martin, Gerard R

    2016-08-01

    The objective of this study was to report procedural characteristics and adverse events on the data collected in the IMproving Paediatric and Adult Congenital Treatment registry. The IMproving Paediatric and Adult Congenital Treatment- registry is a catheterisation registry focussed on paediatric and adult patients with congenital heart disease who are undergoing diagnostic catheterisations and catheter-based interventions. This study reports procedural characteristics and adverse events of patients who have undergone selected catheterisation procedures from January, 2011 to June, 2013. Demographic, clinical, procedural, and institutional data elements were collected at participating centres and entered via either a web-based platform or software provided by the American College of Cardiology-certified vendors, and were collected in a secure, centralised database. For the purpose of this study, procedures that were not classified as one of the 'core' IMproving Paediatric and Adult Congenital Treatment procedures originally chosen for additional data collection were identified and selected for further data analysis. During the time frame of data collection, a total of 8021 cases were classified as other procedures and/or multiple procedures. The most commonly performed case types - isolated or in combination with other procedures - were right ventricular biopsy in 3433 (42.8%), conduit/MPA interventions in 979 (12.3%), and systemic pulmonary artery collateral occlusion in 601 (7.5%). For the whole cohort, adverse events of any severity occurred in 957 (12.0%) cases, whereas major adverse events occurred in 113 (1.4%) cases; six patients (0.1%) died in the catheterisation laboratory. The IMproving Paediatric and Adult Congenital Treatment registry has provided important data on the frequency and spectrum of cardiac catheterisation procedures performed in the present era. For many procedures, more data and work are needed to identify more subtle differences between

  11. [Temporal evolution of antithrombotic therapy use in patients with acute coronary syndromes undergoing percutaneous coronary intervention in Italy: comparison between the EYESHOT and SCOPE registries].

    Science.gov (United States)

    De Luca, Leonardo; Pennacchi, Mauro; Musumeci, Giuseppe; D'Ascenzo, Fabrizio; Gallo, Pamela; Rigattieri, Stefano; Granatelli, Antonino; Berti, Sergio; Gulizia, Michele Massimo; De Servi, Stefano; Bolognese, Leonardo

    2018-02-01

    Few data exist on temporal evolution of antithrombotic agent use in patients with acute coronary syndromes (ACS) undergoing percutaneous coronary intervention (PCI) in Italy. We sought to compare data from the most recent prospective, multicenter, nationwide registries conducted in Italy, namely EYESHOT and SCOPE. EYESHOT enrolled 2585 consecutive ACS patients, both ST-segment elevation myocardial infarction (STEMI) and non-ST elevation ACS (NSTE-ACS), admitted to 203 Italian coronary care units over a 3-week period (2-22 Dec 2013 and 27 Jan-16 Feb 2014). Among patients enrolled in EYESHOT, 1755 (67.9%) underwent PCI (52.6% with STEMI and 47.4% with NSTE-ACS). In the SCOPE registry, a total of 1363 patients undergoing PCI were enrolled over 3 months (15 Feb-15 Apr 2016) in 39 Italian cath lab centers at medium to high PCI volume: 331 (24.3%) with a diagnosis of STEMI and 1032 (75.7%) with a diagnosis of NSTE-ACS. Over 2 years, the use of clopidogrel in the cath lab significantly decreased (from 11% to 8% in STEMI; p=0.06 and from 9% to 5% in NSTE-ACS; p=0.0002), while the administration of ticagrelor dramatically increased (from 14% to 37%; pSCOPE registries, a significant increase in the use of novel P2Y12 receptor inhibitors was observed, both at the time of PCI and at discharge.

  12. Proceedings of the seventeenth annual Canadian Nuclear Society conference

    International Nuclear Information System (INIS)

    1996-01-01

    The seventeenth annual conference of the Canadian Nuclear Society, presented in Fredericton, New Brunswick. The conference includes papers on general topics of interest on the nuclear community, waste management and the environment, instrumentation and design of Candu reactors, safety analysis, thermal hydraulics, fuel channels, plant operations and in-core instrumentation

  13. A Case of Epilepsy and Psychosis in the Seventeenth Century

    Directory of Open Access Journals (Sweden)

    F. Ovsiew

    1992-01-01

    Full Text Available A seventeenth-century painter left an account of his seizures, trances and visions; in 1923 Freud commented on this “demonological neurosis” without discussing the seizures. Attention is drawn to the concurrence of epilepsy and psychosis in this early autobiographical source.

  14. Authenticating the Vocabulary: A Study in Seventeenth-Century ...

    African Journals Online (AJOL)

    Thomas Blount is unique among English compilers of the seventeenth century in systematically naming books and authors as evidence for the use of words entered in his dictionary. Such documentation of the vocabulary would now be associated with scholarly historical dictionaries such as the Johnson and the OED, ...

  15. An updated bleeding model to predict the risk of post-procedure bleeding among patients undergoing percutaneous coronary intervention: a report using an expanded bleeding definition from the National Cardiovascular Data Registry CathPCI Registry.

    Science.gov (United States)

    Rao, Sunil V; McCoy, Lisa A; Spertus, John A; Krone, Ronald J; Singh, Mandeep; Fitzgerald, Susan; Peterson, Eric D

    2013-09-01

    This study sought to develop a model that predicts bleeding complications using an expanded bleeding definition among patients undergoing percutaneous coronary intervention (PCI) in contemporary clinical practice. New knowledge about the importance of periprocedural bleeding combined with techniques to mitigate its occurrence and the inclusion of new data in the updated CathPCI Registry data collection forms encouraged us to develop a new bleeding definition and risk model to improve the monitoring and safety of PCI. Detailed clinical data from 1,043,759 PCI procedures at 1,142 centers from February 2008 through April 2011 participating in the CathPCI Registry were used to identify factors associated with major bleeding complications occurring within 72 h post-PCI. Risk models (full and simplified risk scores) were developed in 80% of the cohort and validated in the remaining 20%. Model discrimination and calibration were assessed in the overall population and among the following pre-specified patient subgroups: females, those older than 70 years of age, those with diabetes mellitus, those with ST-segment elevation myocardial infarction, and those who did not undergo in-hospital coronary artery bypass grafting. Using the updated definition, the rate of bleeding was 5.8%. The full model included 31 variables, and the risk score had 10. The full model had similar discriminatory value across pre-specified subgroups and was well calibrated across the PCI risk spectrum. The updated bleeding definition identifies important post-PCI bleeding events. Risk models that use this expanded definition provide accurate estimates of post-PCI bleeding risk, thereby better informing clinical decision making and facilitating risk-adjusted provider feedback to support quality improvement. Copyright © 2013 American College of Cardiology Foundation. Published by Elsevier Inc. All rights reserved.

  16. The Danish Heart Registry

    DEFF Research Database (Denmark)

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

    2016-01-01

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

  17. Proceedings of the seventeenth LAMPF Users Group meeting

    International Nuclear Information System (INIS)

    Bradbury, J.N.

    1984-04-01

    The seventeenth annual LAMPF Users Group meeting was held November 7-8, 1983, at the Clinton P. Anderson Meson Physics Facility. The program included a number of invited talks on various aspects of nuclear and particle physics as well as status reports on LAMPF. A panel discussion on the LAMPF II concept provided an exchange of views among an advisory group, Users, and LAMPF staff. The LAMPF working groups met and discussed plans for each of the secondary beam lines

  18. Proceedings of the seventeenth LAMPF Users Group meeting

    Energy Technology Data Exchange (ETDEWEB)

    Bradbury, J.N. (comp.)

    1984-04-01

    The seventeenth annual LAMPF Users Group meeting was held November 7-8, 1983, at the Clinton P. Anderson Meson Physics Facility. The program included a number of invited talks on various aspects of nuclear and particle physics as well as status reports on LAMPF. A panel discussion on the LAMPF II concept provided an exchange of views among an advisory group, Users, and LAMPF staff. The LAMPF working groups met and discussed plans for each of the secondary beam lines.

  19. The Danish Schizophrenia Registry

    Directory of Open Access Journals (Sweden)

    Baandrup L

    2016-10-01

    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

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

    Science.gov (United States)

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

    2016-01-19

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

  1. Revascularization Trends in Patients With Diabetes Mellitus and Multivessel Coronary Artery Disease Presenting With Non-ST Elevation Myocardial Infarction: Insights From the National Cardiovascular Data Registry Acute Coronary Treatment and Intervention Outcomes Network Registry-Get with the Guidelines (NCDR ACTION Registry-GWTG).

    Science.gov (United States)

    Pandey, Ambarish; McGuire, Darren K; de Lemos, James A; Das, Sandeep R; Berry, Jarett D; Brilakis, Emmanouil S; Banerjee, Subhash; Marso, Steven P; Barsness, Gregory W; Simon, DaJuanicia N; Roe, Matthew; Goyal, Abhinav; Kosiborod, Mikhail; Amsterdam, Ezra A; Kumbhani, Dharam J

    2016-05-01

    Current guidelines recommend surgical revascularization (coronary artery bypass graft [CABG]) over percutaneous coronary intervention (PCI) in patients with diabetes mellitus and multivessel coronary artery disease. Few data are available describing revascularization patterns among these patients in the setting of non-ST-segment-elevation myocardial infarction. Using Acute Coronary Treatment and Intervention Outcomes Network Registry-Get with the Guidelines (ACTION Registry-GWTG), we compared the in-hospital use of different revascularization strategies (PCI versus CABG versus no revascularization) in diabetes mellitus patients with non-ST-segment-elevation myocardial infarction who had angiography, demonstrating multivessel coronary artery disease between July 2008 and December 2014. Factors associated with use of CABG versus PCI were identified using logistic multivariable regression analyses. A total of 29 769 patients from 539 hospitals were included in the study, of which 10 852 (36.4%) were treated with CABG, 13 760 (46.2%) were treated with PCI, and 5157 (17.3%) were treated without revascularization. The overall use of revascularization increased over the study period with an increase in the proportion undergoing PCI (45% to 48.9%; Ptrend=0.0002) and no change in the proportion undergoing CABG (36.1% to 34.7%; ptrend=0.88). There was significant variability between participating hospitals in the use of PCI and CABG (range: 22%-100%; 0%-78%, respectively; P value treatment of adenosine diphosphate receptor antagonists at presentation, older age, female sex, and history of heart failure. Among patients with diabetes mellitus and multivessel coronary artery disease presenting with non-ST-segment-elevation myocardial infarction, only one third undergo CABG during the index admission. Furthermore, the use of PCI, but not CABG, increased modestly over the past 6 years. © 2016 American Heart Association, Inc.

  2. Walking beyond the GRACE (Global Registry of Acute Coronary Events) model in the death risk stratification during hospitalization in patients with acute coronary syndrome: what do the AR-G (ACTION [Acute Coronary Treatment and Intervention Outcomes Network] Registry and GWTG [Get With the Guidelines] Database), NCDR (National Cardiovascular Data Registry), and EuroHeart Risk Scores Provide?

    Science.gov (United States)

    Raposeiras-Roubín, Sergio; Abu-Assi, Emad; Cabanas-Grandío, Pilar; Agra-Bermejo, Rosa María; Gestal-Romarí, Santiago; Pereira-López, Eva; Fandiño-Vaquero, Rubén; Álvarez-Álvarez, Belén; Cambeiro, Cristina; Rodríguez-Cordero, Marta; Lear, Pamela; Martínez-Monzonís, Amparo; Peña-Gil, Carlos; García-Acuña, José María; González-Juanatey, José Ramón

    2012-11-01

    This study sought to compare the in-hospital prognostic values of the original and updated GRACE (Global Registry of Acute Coronary Events) risk score (RS) and the AR-G (ACTION [Acute Coronary Treatment and Intervention Outcomes Network] Registry and the GWTG [Get With the Guidelines] Database) RS in acute coronary syndromes (ACS). To evaluate the utility of recalculating risk after percutaneous coronary intervention (PCI) with newer RS models (NCDR [National Cardiovascular Data Registry] and EHS [EuroHeart Score] RS). Defined in 2003, GRACE is among the most popular systems of risk stratification in ACS. An updated version of GRACE has since appeared and new RS have been developed, aiming to improve risk prediction. From 2004 to 2010, 4,497 consecutive patients admitted to a single center in Spain with an ACS were included (32.1% ST-segment elevation myocardial infarction, 19.2% unstable angina). Discrimination (C-statistic) and calibration (Hosmer-Lemeshow [HL]) indexes were used to assess performance of each RS. A comparative analysis of RS designed to predict post-PCI mortality NCDR and EHS RS versus the GRACE and AR-G RS was performed in a subgroup of 1,113 consecutive patients included in the study. There were 265 in-hospital deaths (5.9%). Original and updated GRACE RS and the AR-G RS all demonstrated good discrimination for in-hospital death (C-statistics: 0.91, 0.90 and 0.90, respectively) with optimal calibration (HL p: 0.42, 0.50, and 0.47, respectively) in all spectra of ACS, according to different managements (PCI vs. conservative) and without significant differences between the 3 different RS. In patients undergoing PCI, EHS and NCDR RS (C-statistic = 0.80 and 0.84, respectively) were not superior to GRACE RS (C-statistic = 0.91), albeit in the subgroup of patients undergoing PCI who were categorized as high risk using the GRACE RS, both EHS and NCDR have contributed to decrease the false positive rate generated by using the GRACE RS. Despite having

  3. Prospective, multi-center evaluation of a silicon carbide coated cobalt chromium bare metal stent for percutaneous coronary interventions: Two-year results of the ENERGY Registry

    Energy Technology Data Exchange (ETDEWEB)

    Erbel, Raimund, E-mail: erbel@uk-essen.de [Department of Cardiology, University of Duisburg-Essen, Essen (Germany); Eggebrecht, Holger [Cardioangiological Center Bethanien (CCB), Frankfurt (Germany); Roguin, Ariel [Department of Cardiology, Rambam Medical Center, Haifa (Israel); Schroeder, Erwin [Division of Cardiovascular Medicine, Cliniques Universitaires de Mont-Godinne, Yvoir (Belgium); Philipp, Sebastian [Department Internal Medicine/Cardiology, Elbe Klinikum Stade, Stade (Germany); Heitzer, Thomas [Department of Cardiology, Heart Center Dortmund, Dortmund (Germany); Schwacke, Harald [Department of Internal Medicine, Diakonissen-Stiftungs- Krankenhaus Speyer (Germany); Ayzenberg, Oded [The Heart Institute, Kaplan Medical Center, Rehovot (Israel); Serra, Antonio [Servicio de Cardiología, Hospital de la Santa Creu i Sant Pau, Barcelona, España (Spain); Delarche, Nicolas [Cardiology unit, Pau General Hospital, Pau (France); Luchner, Andreas [Department of Internal Medicine/Cardiology, Universitätsklinikum Regensburg (Germany); Slagboom, Ton [Department of Cardiology, Onze Lieve Vrouwe Gasthuis, Amsterdam (Netherlands)

    2014-11-15

    Background: Novel bare metal stents with improved stent design may become a viable alternative to drug-eluting stents in certain patient groups, particularly, when long-term dual antiplatelet therapy should be avoided. Purpose: The ENERGY registry aimed to assess the safety and benefits of a cobalt–chromium thin strut bare metal stent with a passive coating in a large series of patients under real-world conditions. Methods and materials: This prospective registry recruited 1016 patients with 1074 lesions in 48 centers from April to November 2010. The primary endpoint was the rate of major adverse cardiac events (MACEs), a composite of cardiac death, myocardial infarction and clinically driven target lesion revascularization. Results: More than half of the lesions (61.0%) were type A/B1 lesions, mean lesion length was 14.5 ± 6.5 mm and mean reference vessel diameter 3.2 ± 0.5 mm. MACE rates at 6, 12 and 24 months were 4.9%, 8.1% and 9.4%, target lesion revascularization rates 2.8%, 4.9% and 5.4% and definite stent thrombosis rates 0.5%, 0.6% and 0.6%. Subgroups showed significant differences in baseline and procedural characteristics which did not translate into significantly different clinical outcomes. Specifically, MACE rates at 24 months were 13.5% in diabetics, 8.6% in small stents and 9.6% in acute coronary syndrome patients. Conclusion: The population of ENERGY reflects real-world conditions with bare metal stents being mainly used in simple lesions. In this setting, percutaneous coronary intervention using a cobalt–chromium thin strut bare metal stent with a passive coating showed very good results up to 24 months. (ClinicalTrials.gov:NCT01056120) Summary for annotated table of contents: The ENERGY international registry evaluated the safety and benefits of a cobalt–chromium thin strut bare metal stent with passive coating in 1016 patients under real-world conditions until 2 years. Results were encouraging with a low composite rate of cardiac death

  4. Prospective, multi-center evaluation of a silicon carbide coated cobalt chromium bare metal stent for percutaneous coronary interventions: Two-year results of the ENERGY Registry

    International Nuclear Information System (INIS)

    Erbel, Raimund; Eggebrecht, Holger; Roguin, Ariel; Schroeder, Erwin; Philipp, Sebastian; Heitzer, Thomas; Schwacke, Harald; Ayzenberg, Oded; Serra, Antonio; Delarche, Nicolas; Luchner, Andreas; Slagboom, Ton

    2014-01-01

    Background: Novel bare metal stents with improved stent design may become a viable alternative to drug-eluting stents in certain patient groups, particularly, when long-term dual antiplatelet therapy should be avoided. Purpose: The ENERGY registry aimed to assess the safety and benefits of a cobalt–chromium thin strut bare metal stent with a passive coating in a large series of patients under real-world conditions. Methods and materials: This prospective registry recruited 1016 patients with 1074 lesions in 48 centers from April to November 2010. The primary endpoint was the rate of major adverse cardiac events (MACEs), a composite of cardiac death, myocardial infarction and clinically driven target lesion revascularization. Results: More than half of the lesions (61.0%) were type A/B1 lesions, mean lesion length was 14.5 ± 6.5 mm and mean reference vessel diameter 3.2 ± 0.5 mm. MACE rates at 6, 12 and 24 months were 4.9%, 8.1% and 9.4%, target lesion revascularization rates 2.8%, 4.9% and 5.4% and definite stent thrombosis rates 0.5%, 0.6% and 0.6%. Subgroups showed significant differences in baseline and procedural characteristics which did not translate into significantly different clinical outcomes. Specifically, MACE rates at 24 months were 13.5% in diabetics, 8.6% in small stents and 9.6% in acute coronary syndrome patients. Conclusion: The population of ENERGY reflects real-world conditions with bare metal stents being mainly used in simple lesions. In this setting, percutaneous coronary intervention using a cobalt–chromium thin strut bare metal stent with a passive coating showed very good results up to 24 months. (ClinicalTrials.gov:NCT01056120) Summary for annotated table of contents: The ENERGY international registry evaluated the safety and benefits of a cobalt–chromium thin strut bare metal stent with passive coating in 1016 patients under real-world conditions until 2 years. Results were encouraging with a low composite rate of cardiac death

  5. Nominalism and constructivism in seventeenth-century mathematical philosophy

    CERN Document Server

    Sepkoski, David

    2013-01-01

    What was the basis for the adoption of mathematics as the primary mode of discourse for describing natural events by a large segment of the philosophical community in the seventeenth century? In answering this question, this book demonstrates that a significant group of philosophers shared the belief that there is no necessary correspondence between external reality and objects of human understanding, which they held to include the objects of mathematical and linguistic discourse. The result is a scholarly reliable, but accessible, account of the role of mathematics in the works of (

  6. Quality of life following coronary artery bypass graft surgery vs. percutaneous coronary intervention in diabetics with multivessel disease: a five-year registry study.

    Science.gov (United States)

    McGrath, Brent M; Norris, Colleen M; Hardwicke-Brown, Emeleigh; Welsh, Robert C; Bainey, Kevin R

    2017-07-01

    The aim of this study is to investigate the long-term relationship between revascularization technique and health status in diabetics with multivessel disease. Using the Alberta Provincial Project for Outcomes Assessment in Coronary Heart Disease (APPROACH) registry, we captured 1319 diabetics with multivessel disease requiring revascularization for an acute coronary syndrome (January 2009-December 2012) and reported health status using the Seattle Angina Questionnaire (SAQ) at baseline, 1, 3 and 5-years [599 underwent coronary artery bypass grafting (CABG); 720 underwent percutaneous coronary intervention (PCI)]. Adjusted analyses were performed using a propensity score-matching technique. After adjustment (including baseline SAQ domain scores), 1-year mean (95% CI) SAQ scores (range 0-100 with higher scores reflecting improved health status) were significantly greater in selected domains for CABG compared to PCI (exertional capacity: 81.7 [79.5-84.0] vs. 78.8 [76.5-81.0], P = 0.07; angina stability: 83.1 [80.4-85.9] vs. 75.0 [72.3-77.8], P quality of life [QOL]: 83.8 [81.7-85.8] vs. 77.2 [75.2-79.2] P diabetics with multivessel disease.

  7. Outcome of percutaneous coronary intervention with the Absorb bioresorbable scaffold: data from the Swedish Coronary Angiography and Angioplasty Registry (SCAAR).

    Science.gov (United States)

    Grimfjärd, Per; James, Stefan; Persson, Jonas; Angerås, Oskar; Koul, Sasha; Omerovic, Elmir; Varenhorst, Christoph; Lagerqvist, Bo; Erlinge, David

    2017-12-20

    Randomised trials indicate higher rates of stent thrombosis (ST) and target lesion failure (TLF) after percutaneous coronary intervention (PCI) with the Absorb bioresorbable scaffold (BRS) compared with modern drug-eluting stents (DES). We aimed to investigate the outcome of all Swedish patients treated with the Absorb BRS. The Absorb BRS (n=810) was compared with commonly used modern DES (n=67,909). The main outcome measure was definite ST; mean follow-up was two years. Despite being implanted in a younger, lower-risk population compared with modern DES, the Absorb BRS was associated with a higher crude incidence of definite ST at stent level: 1.5 vs. 0.6%, hazard ratio (HR) 2.38 (95% confidence interval [CI]: 1.34-4.23), adjusted HR 4.34 (95% CI: 2.37-7.94); pstent restenosis were similar for BRS and DES. Non-compliance with dual antiplatelet therapy (DAPT) guidelines was noted in six out of 12 BRS ST events. Three very late ST events occurred with the Absorb BRS. In this real-world observational study, the Absorb BRS was associated with a significantly higher risk of definite ST compared with modern DES. Non-compliance with DAPT guideline recommendations was common among Absorb definite ST events.

  8. Fractional Flow Reserve and Cardiac Events in Coronary Artery Disease: Data From a Prospective IRIS-FFR Registry (Interventional Cardiology Research Incooperation Society Fractional Flow Reserve).

    Science.gov (United States)

    Ahn, Jung-Min; Park, Duk-Woo; Shin, Eun-Seok; Koo, Bon-Kwon; Nam, Chang-Wook; Doh, Joon-Hyung; Kim, Jun Hong; Chae, In-Ho; Yoon, Jung-Han; Her, Sung-Ho; Seung, Ki-Bae; Chung, Woo-Young; Yoo, Sang-Yong; Lee, Jin Bae; Choi, Si Wan; Park, Kyungil; Hong, Taek Jong; Lee, Sang Yeub; Han, Minkyu; Lee, Pil Hyung; Kang, Soo-Jin; Lee, Seung-Whan; Kim, Young-Hak; Lee, Cheol Whan; Park, Seong-Wook; Park, Seung-Jung

    2017-06-06

    We evaluated the prognosis of deferred and revascularized coronary stenoses after fractional flow reserve (FFR) measurement to assess its revascularization threshold in clinical practice. The IRIS-FFR registry (Interventional Cardiology Research In-cooperation Society Fractional Flow Reserve) prospectively enrolled 5846 patients with ≥1coronary lesion with FFR measurement. Revascularization was deferred in 6468 lesions and performed in 2165 lesions after FFR assessment. The primary end point was major adverse cardiac events (cardiac death, myocardial infarction, and repeat revascularization) at a median follow-up of 1.9 years and analyzed on a per-lesion basis. A marginal Cox model accounted for correlated data in patients with multiple lesions, and a model to predict per-lesion outcomes was adjusted for confounding factors. For deferred lesions, the risk of major adverse cardiac events demonstrated a significant, inverse relationship with FFR (adjusted hazard ratio, 1.06; 95% confidence interval, 1.05-1.08; P <0.001). However, this relationship was not observed in revascularized lesions (adjusted hazard ratio, 1.00; 95% confidence interval, 0.98-1.02; P =0.70). For lesions with FFR ≥0.76, the risk of major adverse cardiac events was not significantly different between deferred and revascularized lesions. Conversely, in lesions with FFR ≤0.75, the risk of major adverse cardiac events was significantly lower in revascularized lesions than in deferred lesions (for FFR 0.71-0.75, adjusted hazard ratio, 0.47; 95% confidence interval, 0.24-0.89; P =0.021; for FFR ≤0.70, adjusted hazard ratio 0.47; 95% confidence interval, 0.26-0.84; P =0.012). This large, prospective registry showed that the FFR value was linearly associated with the risk of cardiac events in deferred lesions. In addition, revascularization for coronary artery stenosis with a low FFR (≤0.75) was associated with better outcomes than the deferral, whereas for a stenosis with a high FFR (≥0

  9. Medical astrology in Spain during the seventeenth century.

    Science.gov (United States)

    Lanuza Navarro, Tayra M C

    2006-01-01

    It is well known that astrological practice during the Early Modern period was closely related to medicine, and that it provided a tool for diagnosis and treatments. An interesting aspect of this relationship of medicine and astrology is the recognition of the prevailing ideas about medical astrology in the astrological works and astrological-medical treatises. This article discusses the ideas of Galenism and the astrological doctrines that established such a strong relationship between astrology and medicine. There is an overview of the Spanish authors who wrote about the subject, especially those linked with the universities. The paper then goes into detail about the examples of these ideas found in the Spanish printed texts of the seventeenth century. Finally, there is a section on some very interesting and little known treatises on medical astrology which were a reference for the practice of astrological medicine in the period.

  10. Transradial versus transfemoral approach in patients undergoing primary percutaneous coronary intervention for ST-elevation acute myocardial infarction: insight from the CREDO-Kyoto AMI registry.

    Science.gov (United States)

    Yamashita, Yugo; Shiomi, Hiroki; Morimoto, Takeshi; Yaku, Hidenori; Kaji, Shuichiro; Furukawa, Yutaka; Nakagawa, Yoshihisa; Ando, Kenji; Kadota, Kazushige; Abe, Mitsuru; Akao, Masaharu; Nagao, Kazuya; Shizuta, Satoshi; Ono, Koh; Kimura, Takeshi

    2017-12-01

    Recent randomized clinical trials demonstrated that transradial approach was a preferred approach for primary percutaneous coronary intervention (PCI) in ST-elevation acute myocardial infarction (STEMI). However, clinical outcomes of transradial approach in STEMI have not been adequately evaluated yet in the real-world practice, which includes hemodynamically unstable high-risk patients. We identified 3662 STEMI patients who had primary PCI within 24 h after symptom onset and were treated by transradial (N = 471) or transfemoral (N = 3191) approach in the CREDO-Kyoto AMI registry. In the current analysis, we compared clinical characteristics and long-term outcomes between the 2 groups of patients treated by transradial approach and transfemoral approach. The prevalence of hemodynamically compromised patients (Killip II-IV) was significantly less in the transradial group than in the transfemoral group (19 vs. 25%, P = 0.002). Cumulative 5-year incidences of death/MI/stroke, and major bleeding were not significantly different between the transradial and transfemoral groups (26.7 vs. 25.9%, log-rank P = 0.91, and 11.3 vs. 11.5%, log-rank P = 0.71, respectively). After adjustment for confounders, the risks of the transradial group relative to the transfemoral group were not significant for both death/MI/stroke [Hazard ratio (HR) 1.15, 95% confidence interval (CI) 0.83-1.59, P = 0.41] and major bleeding (HR 1.29, 95% CI 0.77-2.15, P = 0.34). In the subgroup of hemodynamically compromised patients, there were also no significant differences in the risks for death/MI/stroke and major bleeding between the 2 groups. Clinical outcomes of transradial approach were not different from those of transfemoral approach in primary PCI for STEMI in the real-world practice.

  11. Clinical Case Registries (CCR)

    Data.gov (United States)

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

  12. Converged Registries Solution (CRS)

    Data.gov (United States)

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

  13. Seventeenth Semiannual Report of the Commission to the Congress, January 1955

    Energy Technology Data Exchange (ETDEWEB)

    Strauss, Lewis L.

    1955-01-29

    The document represents the seventeenth semiannual Atomic Energy Commission (AEC) report to Congress. The report sums up the major activities and developments in the national atomic energy program covering the period July - December 1954.

  14. Asian knowledge and the development of calico printing in Europe in the seventeenth and eighteenth centuries

    OpenAIRE

    Riello, Giorgio

    2010-01-01

    From the seventeenth century, the brilliance and permanence of colour and the exotic nature of imported Asian textiles attracted European consumers. The limited knowledge of colouring agents and the general absence of textile printing and dyeing in Europe were, however, major impediments to the development of a cotton textile-printing and -dyeing industry in Europe. This article aims to chart the rise of a European calico-printing industry in the late seventeenth and eighteenth centuries by a...

  15. ‘out of their owne mouths’? Conversion Narratives and English Radical Religious Practice in the Seventeenth Century

    Directory of Open Access Journals (Sweden)

    Donatella Pallotti

    2012-03-01

    Full Text Available This article focuses on a form of writing, the conversion narrative, which was familiar to mid-seventeenth-century godly readers. The purpose of the narrative, which was a prerequisite for admission to the Church of Visible Saints, was to give the congregation a spoken account of the experience of conversion and of the workings of Grace in the life of the regenerate individual. Some of these reports were transcribed, revised, and published by the ministers of the churches. By focusing on the complex relationships between the ‘original’ experience, its expression, and subsequent written transmission, the tension between individuality and conformity, and the various forms of editorial intervention adopted by the ministers, this study attempts to highlight the collaborative nature of the textual construction of the conversion narrative and to address some crucial issues concerning both the authenticity of the memory recorded and its ‘true’ author.

  16. Validation of defibrillator lead performance registry data

    DEFF Research Database (Denmark)

    Kristensen, Anders Elgaard; Larsen, Jacob Moesgaard; Nielsen, Jens Cosedis

    2017-01-01

    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........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......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...

  17. Utilization, Characteristics, and In-Hospital Outcomes of Coronary Artery Bypass Grafting in Patients With ST-Segment-Elevation Myocardial Infarction: Results From the National Cardiovascular Data Registry Acute Coronary Treatment and Intervention Outcomes Network Registry-Get With The Guidelines.

    Science.gov (United States)

    Pi, Yi; Roe, Matthew T; Holmes, DaJuanicia N; Chiswell, Karen; Garvey, J Lee; Fonarow, Gregg C; de Lemos, James A; Garratt, Kirk N; Xian, Ying

    2017-08-01

    There are limited data on the utilization and outcomes of coronary artery bypass grafting (CABG) among ST-segment-elevation myocardial infarction (STEMI) patients in contemporary practice. Using data from National Cardiovascular Data Registry Acute Coronary Treatment and Intervention Outcomes Network Registry-Get With The Guidelines between 2007 and 2014, we analyzed trends in CABG utilization and hospital-level variation in CABG rates. Patients undergoing CABG during the index admission were categorized by the most common scenarios: (1) CABG only as the primary reperfusion strategy; (2) CABG after primary percutaneous coronary intervention; and (3) CABG after fibrinolytic therapy. A total of 15 145 patients (6.3% of the STEMI population) underwent CABG during the index hospitalization, with a decrease in utilization from 8.3% in 2007 to 5.4% in 2014 (trend P value use of CABG in STEMI varied widely from 0.5% to 36.2% (median, 5.3%; interquartile range [IQR], 3.5%-7.8%; P value use of CABG, and CABG was typically performed within 1 to 3 days after angiography. Observed mortality rates appear low, suggesting that CABG might be safely performed in select STEMI patients in a timely fashion. © 2017 American Heart Association, Inc.

  18. Proceedings of the Seventeenth DOE Solar Photochemistry Research Conference

    Energy Technology Data Exchange (ETDEWEB)

    1993-12-31

    The Seventeenth DOE Solar Photochemistry Research Conference sponsored by the Division of Chemical Sciences, Office of Basic Energy Sciences, is being held June 6--10, 1993, at Cragun`s Lodge and Conference Center, Brainerd, Minnesota The meeting is hosted this year by the Ames Laboratory of Iowa State University. The purpose of the meeting is to foster cooperation, collaboration, and exchange of current research ideas among grantees and contractors of the DOE Division of Chemical Sciences engaged in fundamental research on solar photochemical energy conversion. This conference provides a special opportunity for interaction among investigators from diverse traditional chemistry disciplines who share the common good of providing the knowledge and concepts needed for production of low cost fuels and chemicals or electricity by photochemical conversion of solar energy. Our special guest plenary lecturer is Professor Graham Fleming, of the University of Chicago, who will speak on ultrafast spectroscopic studies of molecular dynamics in the condensed phase. The remaining presentations on Monday will feature further investigations of ultrafast phenomena in solvation, electron transfer, and charge separation at interfaces. These will lead into the topical sessions which follow on photosynthesis, molecular models, photoinduced charge transfer in homogeneous and heterogeneous solutions, inorganic photochemistry, and photoelectrochemistry. As an added feature, the photoelectrochemistry session will include six short introductory lectures for the benefit of nonspecialists on outstanding issues and problems in that field. In this volume may be found a copy of the program, the abstracts of 28 formal presentations and 59 posters, as well as an address listing of the 114 participants.

  19. The Danish Heart Registry

    Directory of Open Access Journals (Sweden)

    Özcan C

    2016-10-01

    Full Text Available Cengiz Özcan,1,2 Knud Juel,1 Jens Flensted Lassen,3 Lene Mia von Kappelgaard,1 Poul Erik Mortensen,4 Gunnar Gislason1,2 1The National Institute of Public Health, University of Southern Denmark, Copenhagen K, Denmark; 2Department of Cardiology, Copenhagen University Hospital Gentofte, Hellerup, Denmark; 3Department of Cardiology, The Heart Center, Copenhagen University Hospital Rigshospitalet, Copenhagen Ø, Denmark; 4Department of Thoracic Surgery, Odense University Hospital, Odense C, Denmark 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 and WDHR. For each type of procedure, up to 70 variables are registered in the DHR. Since 2010, the data quality protocol encompasses fulfillment of web-based validation rules of daily-submitted records and yearly approval of the data by the EDHR and WDHR. Descriptive data: The data collection on procedure has been complete for PCI and surgery since 2000, and for CAG as of 2006. From 2000 to 2014, the number of CAG, PCI, and surgical procedures changed by 231%, 193%, and 99%, respectively. Until the end of 2014, a total of 357,476 CAG, 131,309 PCI, and 60,831 surgical procedures had been performed, corresponding to 249,445, 100,609, and 55,539 first-time patients, respectively. The DHR generally has a high level of completeness (1–missing of each procedure (.90% when compared to the National Patient Registry. Variables important for assessing the quality of care have

  20. CIRSE Vascular Closure Device Registry

    International Nuclear Information System (INIS)

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

    2011-01-01

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

  1. Establishing a Pharmacy-Based Patient Registry System: A Pilot Study for Evaluating Pharmacist Intervention for Patients with Long-Term Medication Use

    Directory of Open Access Journals (Sweden)

    Manabu Akazawa

    2018-01-01

    Full Text Available Background: In Japan, an increasing number of patients are prescribed a large amount of long-term medications by large hospitals that are then dispensed by a community pharmacy. This practice often leads to considerable wastage of medicine. As part of their professional role, community pharmacists are expected to contribute more to the appropriate use of medication by patients. Using a prospective cohort, we aimed to evaluate pharmacists’ role in the community. Methods: We created a patient registry system for community pharmacies to monitor long-term medication use by patients with chronic conditions. Patient drug adherence and potential problems were monitored through regular home visits or telephone calls by the pharmacist at least once a month between patient hospital visits. Patient data were collected and stored in an internet-based system. Results: Over a one-year follow-up, 28 out of 37 registered patients from 14 community pharmacies were continuously monitored. In total, we extracted 19 problems relating to medication use, 17 to physical complaints, eight to patient concerns, and two others. Conclusion: The registry system was useful for identifying medication-related problems as well as patient concerns and changes in their condition. Pharmacists might play a key role in improving patient care in the community.

  2. Seventeenth symposium on biotechnology for fuels and chemicals. Program and abstracts

    Energy Technology Data Exchange (ETDEWEB)

    NONE

    1995-05-01

    This volume contains the abstracts of oral and poster presentations made at the Seventeenth Symposium on Biotechnology for Fuels and Chemicals. Session titles include Thermal, Chemical, and Biological Processing; Applied Biological Research; Bioprocessing Research; Special Topics Discussion Groups; Process Economics and Commercialization; and Environmental Biotechnology.

  3. Port Royal and the Seventeenth-Century Paradigm Shift in Language Teaching.

    Science.gov (United States)

    Benson, Malcolm J.

    2002-01-01

    Focuses on a scholarly, seventeenth century, religious society of Jansenists who founded the Port-Royal des Champs in Paris (France). States their writings and teachings were considered heretical. Finds Port-Royal's ideas later became popular culminating in the acceptance of Latin and language translation curricula. (KDR)

  4. Scholasticism revisited: methodological reflections on the study of seventeenth-century reformed thought

    NARCIS (Netherlands)

    Asselt, W.J. van

    2009-01-01

    Historical theologians have commonly held that a rather negative connection exists between the two major intellectual movements in the Protestant world of the sixteenth and seventeenth centuries – the Reformation and Protestant scholasticism. These scholars have condemned the writings of the

  5. Sexuality, Elites, and Court Life in the Late Seventeenth Century: The Diaries of Constantijn Huygens, Jr.

    NARCIS (Netherlands)

    R.M. Dekker (Rudolf)

    1999-01-01

    textabstractIn the last quarter of the seventeenth century, the following joke circulated in the Dutch Republic: A very fat nobleman married a lady-in-waiting of the Princess of Orange. Because of his big belly, he was afraid that he would not be able to manage intercourse with her. However, she

  6. (Extra)Ordinary letters. A view from below on seventeenth-century Dutch

    NARCIS (Netherlands)

    Nobels, Judith Maria Petrus

    2013-01-01

    In the National Archives in Kew, London, a treasure is kept which is of great importance for the history of the Dutch language: a collection of seventeenth-century letters written by men and women from various social backgrounds. Given the fact that much of the linguistic research of

  7. Blaming and demonizing. Satirical pamphlet literature in the seventeenth-century Dutch Republic

    NARCIS (Netherlands)

    Drees, Marijke Meijer

    This article discusses the rhetoric and function of seventeenth-century Dutch clandestine satire as counterpart to the more official laudatory literature in which the mighty regents were morally praised and honoured because of their civic virtues. While these laudatory texts served both as honorary

  8. Was Plague an Exclusively Urban Phenomenon? Plague Mortality in the Seventeenth-Century Low Countries

    NARCIS (Netherlands)

    Curtis, D.R.

    2016-01-01

    Current scholarship reinforces the notion that by the early modern period, plague had become largely an urban concern in northwestern Europe. However, a data set comprised of burial information from the seventeenth-century Low Countries suggests that plague’s impact on the countryside was far more

  9. Clashes of discourses: Humanists and Calvinists in seventeenth-century academic Leiden

    NARCIS (Netherlands)

    Kromhout, D.

    2016-01-01

    Using Michel Foucault's concept of discursive change and Stephen Greenblatt's ideas about social poetics and self-fashioning, 'Clashes of Discourses: Calvinists and Humanists in Seventeenth-Century Academic Leiden' explains developments in the literary works of leading Leiden humanists against the

  10. 77 FR 71474 - Seventeenth Meeting: RTCA Special Committee 224, Airport Security Access Control Systems

    Science.gov (United States)

    2012-11-30

    ... Committee 224, Airport Security Access Control Systems AGENCY: Federal Aviation Administration (FAA), U.S... Access Control Systems. SUMMARY: The FAA is issuing this notice to advise the public of the seventeenth meeting of the RTCA Special Committee 224, Airport Security Access Control Systems. DATES: The meeting...

  11. Five Osmans: The Ottoman crisis of 1622 in early seventeenth-century literature

    NARCIS (Netherlands)

    Ajdinović, I.

    2014-01-01

    In my dissertation I have explored the early seventeenth-century literary representations of the 1622 janissary uprising against Sultan Osman II (1618-1622). The young Ottoman sultan lost his life during this rebellion. The news of Osman’s death caused a sensation both in the Ottoman Empire and in

  12. Niels Hemmingsen and the Construction of a Seventeenth-Century Protestant Memory

    DEFF Research Database (Denmark)

    Sommer, Mattias Skat

    2017-01-01

    Danish reformer Niels Hemmingsen was a Lutheran, but owing to Pan-Protestant sentiments that became apparent in his later writings, he found an appreciative audience in non-Lutheran Western Europe during the late sixteenth and early seventeenth centuries. This article argues that the early modern...... (Saxony), and exporting it to the West (The Low Countries, England)....

  13. MULTInational non-interventional study of patients with ST-segment elevation myocardial infarction treated with PRimary Angioplasty and Concomitant use of upstream antiplatelet therapy with prasugrel or clopidogrel - the European MULTIPRAC Registry

    DEFF Research Database (Denmark)

    Clemmensen, Peter; Grieco, Niccolò; Ince, Hüseyin

    2015-01-01

    -percutaneous coronary intervention (PCI) TIMI flow 2-3 was seen in 38.7% treated with prasugrel vs. 35.6% with clopidogrel (adjusted OR 1.170 [0.863-1.585]). Post PCI ST-segment resolution ⩾50%, was 71.6% with prasugrel vs. 65.0% with clopidogrel (adjusted OR 1.543 [1.138-2.093], p=0.0052). CONCLUSIONS: MULTIPRAC...... registry enrolling 2053 ST-segment elevation myocardial infarction (STEMI) patients. Patients were grouped according to adherence to the initially prescribed thienopyridine. Pre-hospital use of prasugrel increased from 12.5% to 67.1% at study end. Prasugrel compared to clopidogrel-initiated patients more...

  14. [Characteristics and mortality following primary percutaneous coronary intervention for acute myocardial infarction in Spain. Results from the TRIANA 1 (TRatamiento del Infarto Agudo de miocardio eN Ancianos) Registry].

    Science.gov (United States)

    Cequier, Angel; Bueno, Héctor; Augé, Josep M; Bardají, Alfredo; Fernández-Ortiz, Antonio; Heras, Magda

    2005-04-01

    Although more elderly patients will experience acute myocardial infarction (AMI) in coming years, the best reperfusion strategy in these patients remains unknown. The Spanish TRIANA (TRatamiento del Infarto Agudo de miocardio eN Ancianos) registry was set up to determine the feasibility of performing a randomized study of percutaneous coronary intervention (PCI) versus thrombolysis in AMI patients aged > or =75 years. The TRIANA 1 subregistry included consecutive patients of all ages with ST-segment-elevation AMI ( or =75 years (mortality, 24%), 58 (55.7%) fulfilled criteria for inclusion in a randomized study. 1) The TRIANA 1 subregistry probably reflects the reality of PCI for AMI in Spain. 2) Mortality at 1 month was associated with classic predictive factors. 3) Some 50% of patients > or =75 years old who underwent PCI could be included in a randomized study. These findings indicate that randomized study to determine the best reperfusion strategy in elderly AMI patients is feasible.

  15. Facility Registry Service (FRS)

    Data.gov (United States)

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

  16. The Danish HD Registry

    DEFF Research Database (Denmark)

    Gilling, M.; Budtz-Jorgensen, E.; Boonen, S. E.

    2017-01-01

    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...

  17. Mirzam C. Pérez, The Comedia of Virginity: Mary and the Politics of Seventeenth-Century Spanish Theater

    Directory of Open Access Journals (Sweden)

    Natalia Fernández

    2016-01-01

    Full Text Available Reseña de Mirzam C. Pérez, The Comedia of Virginity: Mary and the Politics of Seventeenth-Century Spanish Theater, Waco (Texas, Baylor University Press, 2012, 173 pp. ISBN: 9781602586451.

  18. Romance in Peril: A Survey of the Genre in Seventeenth Century English Literature

    Directory of Open Access Journals (Sweden)

    Mustafa Bal

    2008-12-01

    Full Text Available The seventeenth century in England can be seen as the age which marked the beginning of modernity as well as the beginning of empirical thought. Rationalization of viewpoints combined with the political turmoil of the century, causing immense setbacks within the English literary traditions. One of these setbacks took place within the romance tradition which had been a major mode of writing during the earlier centuries. In this sense, this article analyses reasons of the decline of the romance tradition throughout seventeenth century English literature as well as examining how the genre managed to survive either implicitly or explicitly in several works like Oroonoko by Aphra Behn, pastoral poems by Andrew Marvel and Milton, and in some parts of Milton’s Paradise Lost.

  19. Practicing between earth and heaven : women healers in seventeenth-century Bologna

    OpenAIRE

    Pomata, Gianna

    1999-01-01

    In the highly stratified medical system of seventeenth-century Bologna, women healers occupied a low-rank position. Officially women could practice medicine only as midwives or as holders of permits for the sale of patent medicines. Women were a relatively marginal group even within unauthorized medical practice. Of the criminal proceedings against unlicensed healers only 12% were directed against women. In contrast, women were prominent in religious healing-as shown by the record of healing ...

  20. The Pontifical College of la Sapiencia of Majorca during the seventeenth century: constitutions and collegials

    Directory of Open Access Journals (Sweden)

    Rafael RAMIS BARCELÓ

    2015-04-01

    Full Text Available This paper seeks to make known the Pontifical College of la Sapiencia of Majorca throughout their sources since its founding in 1633 until 1700. Some especial attention is deserved to the Constitutions of the Centre, compared with the Constitutions of Presentation College of Valencia. The article discusses particularly College life, Studies and Visits. The document is intended as a contribution to the academic and ecclesiastical history that provides a better understanding of Majorcan training institutions in the seventeenth century.

  1. Fit for a Shogun's Wife : The Two Seventeenth-Century Mausolea for Sūgen-in

    OpenAIRE

    SELF, Elizabeth

    2017-01-01

    It has been established that in the seventeenth century, Tokugawa Iemitsu (1604–1651) launched a widespread program of art and architectural patronage, intended to claim legitimacy for his rule, including the construction of elaborate mausoleums for his father and grandfather. However, the part played by women in this process has not yet been examined. I argue that despite the seeming invisibility of these women in the historical record, Iemitsu purposefully incorporated his mother, Sūgen-in ...

  2. [Trauma registry and injury].

    Science.gov (United States)

    Shapira, S C

    2001-10-01

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

  3. Data Element Registry Services

    Data.gov (United States)

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

  4. 911 Master PSAP Registry

    Data.gov (United States)

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

  5. The Prevalence of Cardiovascular Disease Risk Factors and the Framingham Risk Score in Patients Undergoing Percutaneous Intervention Over the Last 17 Years by Gender: Time-trend Analysis From the Mayo Clinic PCI Registry

    Directory of Open Access Journals (Sweden)

    Moo-Sik Lee

    2014-07-01

    Full Text Available Objectives: This study aims to investigate trends of cardiovascular disease (CVD risk factor profiles over 17 years in percutaneous coronary intervention (PCI patients at the Mayo Clinic. Methods: We performed a time-trend analysis within the Mayo Clinic PCI Registry from 1994 to 2010. Results were the incidence and prevalence of CVD risk factors as estimate by the Framingham risk score. Results: Between 1994 and 2010, 25 519 patients underwent a PCI. During the time assessed, the mean age at PCI became older, but the gender distribution did not change. A significant trend towards higher body mass index and more prevalent hypercholesterolemia, hypertension, and diabetes was found over time. The prevalence of current smokers remained unchanged. The prevalence of ever-smokers decreased among males, but increased among females. However, overall CVD risk according to the Framingham risk score (FRS and 10-year CVD risk significantly decreased. The use of most of medications elevated from 1994 to 2010, except for β-blockers and angiotensin converting enzyme inhibitors decreased after 2007 and 2006 in both baseline and discharge, respectively. Conclusions: Most of the major risk factors improved and the FRS and 10-year CVD risk declined in this population of PCI patients. However, obesity, history of hypercholesterolemia, hypertension, diabetes, and medication use increased substantially. Improvements to blood pressure and lipid profile management because of medication use may have influenced the positive trends.

  6. Combined Value of Red Blood Cell Distribution Width and Global Registry of Acute Coronary Events Risk Score for Predicting Cardiovascular Events in Patients with Acute Coronary Syndrome Undergoing Percutaneous Coronary Intervention.

    Science.gov (United States)

    Zhao, Na; Mi, Lan; Liu, Xiaojun; Pan, Shuo; Xu, Jiaojiao; Xia, Dongyu; Liu, Zhongwei; Zhang, Yong; Xiang, Yu; Yuan, Zuyi; Guan, Gongchang; Wang, Junkui

    2015-01-01

    Global Registry of Acute Coronary Events (GRACE) risk score and red blood cell distribution width (RDW) content can both independently predict major adverse cardiac events (MACEs) in patients with acute coronary syndrome (ACS). We investigated the combined predictive value of RDW and GRACE risk score for cardiovascular events in patients with ACS undergoing percutaneous coronary intervention (PCI) for the first time. We enrolled 480 ACS patients. During a median follow-up time of 37.2 months, 70 (14.58%) patients experienced MACEs. Patients were divided into tertiles according to the baseline RDW content (11.30-12.90, 13.00-13.50, 13.60-16.40). GRACE score was positively correlated with RDW content. Multivariate Cox analysis showed that both GRACE score and RDW content were independent predictors of MACEs (hazard ratio 1.039; 95% confidence interval [CI] 1.024-1.055; p risk of MACEs increased with increasing RDW content (p value of combining RDW content and GRACE risk score was significantly improved, also shown by the net reclassification improvement (NRI = 0.352, p value of RDW and GRACE risk score yielded a more accurate predictive value for long-term cardiovascular events in ACS patients who underwent PCI as compared to each measure alone.

  7. Outcome of Triple Antiplatelet Therapy Including Cilostazol in Elderly Patients with ST-Elevation Myocardial Infarction who Underwent Primary Percutaneous Coronary Intervention: Results from the INTERSTELLAR Registry.

    Science.gov (United States)

    Jang, Ho-Jun; Park, Sang-Don; Park, Hyun Woo; Suh, Jon; Oh, Pyung Chun; Moon, Jeonggeun; Lee, Kyounghoon; Kang, Woong Chol; Kwon, Sung Woo; Kim, Tae-Hoon

    2017-06-01

    Compared with dual antiplatelet therapy including aspirin and clopidogrel, triple antiplatelet therapy including cilostazol has a mortality benefit in patients with ST-segment elevation myocardial infarction. However, whether the mortality benefit persists in elderly patients is not clear. From 2007 to 2014, 1278 patients with ST-segment elevation myocardial infarction who underwent primary percutaneous coronary intervention were retrospectively analyzed. The patients were divided into four groups by age (elderly, respectively) and antiplatelet strategy (triple or dual antiplatelet therapy). We compared the mortality rates between the triple and dual antiplatelet therapy groups. There were 1052 (male, 85%; mean age, 56.3 ± 10.4 years) patients in the young group and 241 (male, 52.7%; mean age, 80.3 ± 4.5 years) patients in the elderly group. In the young and elderly groups, 220 (20.9%) and 28 (12.3%) patients were treated with triple antiplatelet therapy. During a 1-year follow-up period, 80 patients died (4.2% in the young group vs. 15.5% in the elderly group). Kaplan-Meier survival analysis revealed that triple antiplatelet therapy was associated with a lower mortality rate in the young group (log-rank, p = 0.005). Although there were more angiographic high-risk patients in the elderly group, similar mortality rates were reported (log-rank, p = 0.803) without increased bleeding rates (1 vs. 3.6% in the elderly group, p = 0.217). Triple antiplatelet therapy might be a better antiplatelet regimen than dual antiplatelet therapy for patients with ST-segment elevation myocardial infarction. Although this benefit was strong in patients aged elderly patients (aged ≥75 years).

  8. Indian transplant registry

    Directory of Open Access Journals (Sweden)

    Sunil Shroff

    2007-01-01

    Full Text Available An ′Indian transplant registry′ has been established over the past two years due to the efforts of the Indian Society of Organ Transplantation. This society is about 20 years old with over 450 members who are doctors and basic scientist. The registry is currently in the first phase of its development and can be partly viewed at www.transplantindia.com. The endeavor has been undertaken with the objective of having a centralized repository of information of the various transplants that are being undertaken in India. In its first phase of the registry ′Fast Fact′ retrospective short datasets are being captured that include the essential details of the transplant programme. The fast fact data includes the number of transplant done yearly, the sex ratio and type of transplant. So far thirteen major institutional data has been entered in the registry. In the second phase of the registry, over twenty fields are likely to be captured and all member institutions would be encouraged to enter the data prospectively. In the third phase data would be derived with ongoing audit features.. The society and its members have supported the formation of the registry and are enthusiastic about its potential.

  9. Developing a UK registry to investigate the role of cardiovascular magnetic resonance (CMR) in patients who activate the primary percutaneous coronary intervention (PPCI) pathway: a multicentre, feasibility study linking routinely collected electronic patient data.

    Science.gov (United States)

    Brierley, Rachel C; Pufulete, Maria; Harris, Jessica; Bucciarelli-Ducci, Chiara; Greenwood, John P; Dorman, Stephen; Anderson, Richard; Rogers, Chris A; Reeves, Barnaby C

    2018-03-01

    To determine whether it is feasible to set up a national registry, linking routinely collected data from hospital information systems (HIS), to investigate the role of cardiovascular magnetic resonance (CMR) in patients who activate the primary percutaneous coronary intervention (PPCI) pathway. Feasibility prospective cohort study, to establish whether: (1) consent can be implemented; (2) data linkage and extraction from multiple HIS can be achieved for >90% of consented patients; (3) local data can be successfully linked with hospital episode data (Hospital Episode Statistics, HES; Patient Episode Database for Wales, PEDW) for >90% of consented patients and (4) the proportion of patients activating the PPCI pathway who get a CMR scan is ≥10% in hospitals with dedicated CMR facilities. Patients from four 24/7 PPCI hospitals in England and Wales (two with and two without a dedicated CMR facility) who activated the PPCI pathway and underwent an emergency coronary angiogram. Consent was successfully implemented at all hospitals (consent rates ranged from 59% to 74%) and 1670 participants were recruited. Data submission was variable: all hospitals submitted clinical data (for ≥82% of patients); only three hospitals submitted biochemistry data (for ≥98% of patients) and echocardiography data (for 34%-87% of patients); only one hospital submitted medications data (for 97% of patients). At the two CMR centres, 14% and 20% of patients received a CMR scan. Data submitted by hospitals were linked with HES and PEDW for 99% of all consented patients. We successfully consented patients but obtaining individual, opt-in consent would not be feasible for a national registry. Linkage of data from HIS with hospital episode data was feasible. However, data from HIS are not uniformly available/exportable and, in centres with a dedicated CMR facility, some referrals for CMR were for research rather than clinical purposes. © Article author(s) (or their employer(s) unless

  10. The Danish Stroke Registry

    DEFF Research Database (Denmark)

    Johnsen, Søren Paaske; Ingeman, Annette; Hundborg, Heidi Holmager

    2016-01-01

    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...

  11. Trace metals in contemporary and seventeenth-century Galapagos coral: Records of seasonal and annual variations

    Energy Technology Data Exchange (ETDEWEB)

    Linn, L.J.; Delaney, M.L.; Druffel, E.R.M. (Univ. of California, Santa Cruz (USA))

    1990-02-01

    The authors report trace element/calcium ratios for modern (Cu/Ca, Mn/Ca, Cd/Ca and Pb/Ca) and seventeenth-century (Cu/Ca, Mn/Ca, and Pb/Ca) specimens of Pavona clavus collected in the Galapagos Islands. These data include the first reliable measurements of Cu/Ca ratios in coralline aragonite. They estimate that the ratio of Cu/Ca in the lattice to that in seawater (i.e., the effective distribution coefficient) is {approx} 0.3, lower than the value of 1 observed for several other divalent elements; they estimate the effective distribution coefficient for Mn is {approx} 1. Distribution coefficients in coral aragonite for 8 divalent metals are near unity despite different ionic radii and chemical speciation in seawater. In a modern Hood Island coral, quarter-annually sampled from 1964-73, Cu/Ca ratios decrease twofold from the late 1960s to early 1970s. Mn/Ca and Cd/Ca ratios vary seasonally with upwelling and the generic El Nino. The El Nino Southern Oscillation (ENSO) events of 1965, 1969, and 1972 are marked by suppression of Cd/Ca ratios by about 2.5 nmol/mol, while the Mn/Ca ratio is highest during the strong 1972 ENSO. Pb/Ca ratios were relatively constant throughout this period. From the Cu/Ca record of a seventeenth-century Urvina Bay coral annually sampled from 1600-1725 and the estimated Cu distribution coefficient, surface seawater Cu concentrations at Galapagos during the seventeenth century were similar to present day at 0.7-1.4 nmol/kg. Estimated Pb concentrations were lower at 5-20 pmol/kg, and Mn concentrations were slightly higher at 1.6-2.8 nmol/kg.

  12. The Qingdao Twin Registry

    DEFF Research Database (Denmark)

    Duan, Haiping; Ning, Feng; Zhang, Dongfeng

    2013-01-01

    In 1998, the Qingdao Twin Registry was initiated as the main part of the Chinese National Twin Registry. By 2005, a total of 10,655 twin pairs had been recruited. Since then new twin cohorts have been sampled, with one longitudinal cohort of adolescent twins selected to explore determinants...... of metabolic disorders and health behaviors during puberty and young adulthood. Adult twins have been sampled for studying heritability of multiple phenotypes associated with metabolic disorders. In addition, an elderly twin cohort has been recruited with a focus on genetic studies of aging-related phenotypes...

  13. Sexuality, Elites, and Court Life in the Late Seventeenth Century: The Diaries of Constantijn Huygens, Jr.

    OpenAIRE

    Dekker, Rudolf

    1999-01-01

    textabstractIn the last quarter of the seventeenth century, the following joke circulated in the Dutch Republic: A very fat nobleman married a lady-in-waiting of the Princess of Orange. Because of his big belly, he was afraid that he would not be able to manage intercourse with her. However, she knew how to remedy this with some cushions and body movements. Surprised, he asked her where she had learned this. She answered, "Ho, ho, don't you know that you can learn anything at court." 1 This j...

  14. A Blend of Traditions: The Lute’s Influence on Seventeenth-Century Harpsichord Repertoire

    OpenAIRE

    Audrey S. Rutt

    2017-01-01

    The close relationship between the harpsichord and lute traditions is commonly claimed but rarely elaborated upon, and many experts disagree on the manner in and extent to which the two are related. Often, texts covering the early harpsichord literature will limit discussion of the lute’s influence to a brief mention of the style brisé, if the important connection between the two traditions is even mentioned all. The lute’s impact on the harpsichordists of the seventeenth century is not a fac...

  15. Astrology and other occult sciences in seventeenth-century New Spain.

    Science.gov (United States)

    Avalos, Ana

    2006-01-01

    This article focuses on the relationship and mutual influence of astrology and other so-called occult sciences within the context of seventeenth-century New Spain. By presenting some case studies of inquisitorial trials against astrologers, it explores the interrelation between astrological and physiognomical ideas and practices in order to shed some light on the moral dimension of these natural philosophical fields of knowledge. During the early modern period, both astrology and physiognomy were regarded as tools for self-understanding and the understanding of others by means of interpretation of natural signs. Thus their history is key for understanding the shaping of the boundaries between the natural and the moral realms.

  16. Lenses and waves Christiaan Huygens and the mathematical science of optics in the seventeenth century

    CERN Document Server

    Dijksterhuis, Fokko Jan

    2004-01-01

    In 1690, Christiaan Huygens (1629-1695) published Traité de la Lumière, containing his renowned wave theory of light. It is considered a landmark in seventeenth-century science, for the way Huygens mathematized the corpuscular nature of light and his probabilistic conception of natural knowledge. This book discusses the development of Huygens' wave theory, reconstructing the winding road that eventually led to Traité de la Lumière. For the first time, the full range of manuscript sources is taken into account. In addition, the development of Huygens' thinking on the nature of light is put in t

  17. US Transuranium Registry

    International Nuclear Information System (INIS)

    Breitenstein, B.D. Jr.

    1981-01-01

    The US Transuranium Registry (USTR) is a nationwide autopsy research program conducted by Hanford Environmental Health Foundation since 1968. The USTR is designed to study the distribution, concentration, and possible tissue effects of transuranics in occupationally exposed workers who volunteer to participate in the study

  18. Cancer Registry Data

    Centers for Disease Control (CDC) Podcasts

    2017-05-24

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

  19. The Danish Twin Registry

    DEFF Research Database (Denmark)

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

    2011-01-01

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

  20. The EuroMyositis registry

    DEFF Research Database (Denmark)

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

    2018-01-01

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

  1. Prognostic Impact of Combined Contrast-Induced Acute Kidney Injury and Hypoxic Liver Injury in Patients with ST Elevation Myocardial Infarction Undergoing Primary Percutaneous Coronary Intervention: Results from INTERSTELLAR Registry.

    Science.gov (United States)

    Park, Sang-Don; Moon, Jeonggeun; Kwon, Sung Woo; Suh, Young Ju; Kim, Tae-Hoon; Jang, Ho-Jun; Suh, Jon; Park, Hyun Woo; Oh, Pyung Chun; Shin, Sung-Hee; Woo, Seong-Il; Kim, Dae-Hyeok; Kwan, Jun; Kang, WoongChol

    2016-01-01

    Besides contrast-induced acute kidney injury(CI-AKI), adscititious vital organ damage such as hypoxic liver injury(HLI) may affect the survival in patients with ST-elevation myocardial infarction (STEMI). We sought to evaluate the prognostic impact of CI-AKI and HLI in STEMI patients who underwent primary percutaneous coronary intervention (PCI). A total of 668 consecutive patients (77.2% male, mean age 61.3±13.3 years) from the INTERSTELLAR STEMI registry who underwent primary PCI were analyzed. CI-AKI was defined as an increase of ≥0.5 mg/dL in serum creatinine level or 25% relative increase, within 48h after the index procedure. HLI was defined as ≥2-fold increase in serum aspartate transaminase above the upper normal limit on admission. Patients were divided into four groups according to their CI-AKI and HLI states. Major adverse cardiovascular and cerebrovascular events (MACCE) defined as a composite of all-cause mortality, non-fatal MI, non-fatal stroke, ischemia-driven target lesion revascularization and target vessel revascularization were recorded. Over a mean follow-up period of 2.2±1.6 years, 94 MACCEs occurred with an event rate of 14.1%. The rates of MACCE and all-cause mortality were 9.7% and 5.2%, respectively, in the no organ damage group; 21.3% and 21.3% in CI-AKI group; 18.5% and 14.6% in HLI group; and 57.7% and 50.0% in combined CI-AKI and HLI group. Survival probability plots of composite MACCE and all-cause mortality revealed that the combined CI-AKI and HLI group was associated with the worst prognosis (pINTERSTELLAR ClinicalTrials.gov number, NCT02800421.).

  2. Combined Value of Red Blood Cell Distribution Width and Global Registry of Acute Coronary Events Risk Score for Predicting Cardiovascular Events in Patients with Acute Coronary Syndrome Undergoing Percutaneous Coronary Intervention.

    Directory of Open Access Journals (Sweden)

    Na Zhao

    Full Text Available Global Registry of Acute Coronary Events (GRACE risk score and red blood cell distribution width (RDW content can both independently predict major adverse cardiac events (MACEs in patients with acute coronary syndrome (ACS. We investigated the combined predictive value of RDW and GRACE risk score for cardiovascular events in patients with ACS undergoing percutaneous coronary intervention (PCI for the first time. We enrolled 480 ACS patients. During a median follow-up time of 37.2 months, 70 (14.58% patients experienced MACEs. Patients were divided into tertiles according to the baseline RDW content (11.30-12.90, 13.00-13.50, 13.60-16.40. GRACE score was positively correlated with RDW content. Multivariate Cox analysis showed that both GRACE score and RDW content were independent predictors of MACEs (hazard ratio 1.039; 95% confidence interval [CI] 1.024-1.055; p < 0.001; 1.699; 1.294-2.232; p < 0.001; respectively. Furthermore, Kaplan-Meier analysis demonstrated that the risk of MACEs increased with increasing RDW content (p < 0.001. For GRACE score alone, the area under the receiver operating characteristic (ROC curve for MACEs was 0.749 (95% CI: 0.707-0.787. The area under the ROC curve for MACEs increased to 0.805 (0.766-0.839, p = 0.034 after adding RDW content. The incremental predictive value of combining RDW content and GRACE risk score was significantly improved, also shown by the net reclassification improvement (NRI = 0.352, p < 0.001 and integrated discrimination improvement (IDI = 0.023, p = 0.002. Combining the predictive value of RDW and GRACE risk score yielded a more accurate predictive value for long-term cardiovascular events in ACS patients who underwent PCI as compared to each measure alone.

  3. The coastal metropolitan corn trade in later seventeenth-century England.

    Science.gov (United States)

    Hipkin, Stephen

    2012-01-01

    Exploiting hitherto unexamined London port book data, this article shows that during the last quarter of the seventeenth century the coastal metropolitan corn import trade was twice the size that historians relying on the work of Gras have assumed it to have been. More significantly, it demonstrates that Gras's failure to examine the capital's grain trade other than in terms of aggregate corn imports has disguised the nature and extent of its contribution to the development of the London economy. By the 1680s, the coastal trade comprised two distinct strands of roughly equal size: one providing food and drink for the London population, the other fuelling the overland trade of the capital. It is argued that the former was unnecessary for the provision of the city other than in barren years, but that the latter may have been indispensable for the development of the overland transport infrastructure of the metropolitan region at the height of the late seventeenth-century commercial revolution. Thanks largely to the agency of southern English mariners commanding large coasters, London's demand for fodder crops after the mid-1670s drew most of the coast stretching from Berwick to Whitehaven into the orbit of the metropolitan corn market.

  4. A Blend of Traditions: The Lute’s Influence on Seventeenth-Century Harpsichord Repertoire

    Directory of Open Access Journals (Sweden)

    Audrey S. Rutt

    2017-03-01

    Full Text Available The close relationship between the harpsichord and lute traditions is commonly claimed but rarely elaborated upon, and many experts disagree on the manner in and extent to which the two are related. Often, texts covering the early harpsichord literature will limit discussion of the lute’s influence to a brief mention of the style brisé, if the important connection between the two traditions is even mentioned all. The lute’s impact on the harpsichordists of the seventeenth century is not a facet that can be ignored; rather, an understanding of the lute tradition is essential to an understanding of the harpsichord tradition. Neither can the relationship be isolated to the style brisé, as the influence extends also to other textures, rhythms, harmonic devices, sonorous effects, and genres found within the solo literatures of both the lute and harpsichord. This connection is especially evident in the solo harpsichord works of Francois Couperin, D’Anglebert, Froberger, and Chambonnieres. Ornamentation and broken textures, elements that were evocative of the lute, were incorporated into the already existing keyboard tradition represented by the organ. However, although composers for the harpsichord imitated the style of lutenists such as Gaultier and Pinel, they also transformed it; they developed these lute-like elements in a manner that became distinctly idiomatic to the harpsichord. In this way, the harpsichord idiom that emerged in the seventeenth century was formed by a unique blend of the organ and lute styles.

  5. Duytsche Mathematique and the Building of a New Society : Pursuits of Mathematics in the Seventeenth-Century Dutch Republic

    NARCIS (Netherlands)

    Dijksterhuis, Fokko J.; Cormack, Lesley B.; Schuster, John A.; Walton, Steven A.

    2017-01-01

    In the seventeenth-century Dutch Republic mathematicians and mathematics acquired notable social and intellectual prestige. They contributed to the establishment of a new state, first through practical projects of fortification, navigation, land management, and later also through learned pursuits in

  6. Memorializing the Wars of Religion in Early Seventeenth-Century French Picture Galleries : Protestants and Catholics Painting the Contested Past

    NARCIS (Netherlands)

    van der Linden, David

    2017-01-01

    This article examines how Protestant and Catholic elites in early seventeenth-century France memorialized the Wars of Religion in purpose-built picture galleries. Postwar France remained a divided nation, and portrait galleries offered a sectarian memory of the conflict, glorifying party heroes.

  7. Analysis of a seventeenth-century panel painting by reflection terahertz time-domain imaging (THz-TDI)

    DEFF Research Database (Denmark)

    Dandolo, Corinna Ludovica Koch; Filtenborg, Troels; Skou-Hansen, Jacob

    2015-01-01

    Terahertz time-domain imaging (THz-TDI) has been applied for nondestructive visualization of a hidden painting and other subsurface composition layers of a seventeenth-century panel painting belonging to the National Gallery of Denmark. Plan-type and cross-sectional scans realized by THz have been...

  8. [Connecting the Baltic area : the Swedish postal System in the seventeenth century] / Kaarel Vanamölder

    Index Scriptorium Estoniae

    Vanamölder, Kaarel, 1981-

    2011-01-01

    Arvustus: Connecting the Baltic area : the Swedish postal System in the seventeenth century. Ed. by Heiko Droste. Södertörn Studies in History, 9, Södertörn Academic Studies, 42 (Huddinge: Södertörns högskola, 2011)

  9. 'Beauty and Simplicity' : The power of fine art in moral teaching on education in seventeenth-century Holland

    NARCIS (Netherlands)

    Dekker, J.J.H.

    Seventeenth century Dutch genre painting played a major role in the promotion of the pursuit of family and educational virtues. Packing moralistic messages in fine paintings was considered as a very effective moralistic communication policy in a culture in which sending such moralising messages was

  10. [Jarmo T. Kotilainen. Russia's foreign and economic expansion in the seventeenth century. Windows on the World ] / Enn Küng

    Index Scriptorium Estoniae

    Küng, Enn

    2009-01-01

    Arvustus: Jarmo T. Kotilainen, Jarmo T.. Russia's foreign and economic expansion in the seventeenth century. Windows on the World. XVIII. Leiden : Brill Academic Publishers, 2005. Oma töös vaatleb autor ka Rootsi Läänemere-provintside linnade Riia, Tallinna, Narva ja Nyeni tähtsust Venemaa väliskaubanduses.

  11. Prognostic Impact of Combined Contrast-Induced Acute Kidney Injury and Hypoxic Liver Injury in Patients with ST Elevation Myocardial Infarction Undergoing Primary Percutaneous Coronary Intervention: Results from INTERSTELLAR Registry.

    Directory of Open Access Journals (Sweden)

    Sang-Don Park

    Full Text Available Besides contrast-induced acute kidney injury(CI-AKI, adscititious vital organ damage such as hypoxic liver injury(HLI may affect the survival in patients with ST-elevation myocardial infarction (STEMI. We sought to evaluate the prognostic impact of CI-AKI and HLI in STEMI patients who underwent primary percutaneous coronary intervention (PCI.A total of 668 consecutive patients (77.2% male, mean age 61.3±13.3 years from the INTERSTELLAR STEMI registry who underwent primary PCI were analyzed. CI-AKI was defined as an increase of ≥0.5 mg/dL in serum creatinine level or 25% relative increase, within 48h after the index procedure. HLI was defined as ≥2-fold increase in serum aspartate transaminase above the upper normal limit on admission. Patients were divided into four groups according to their CI-AKI and HLI states. Major adverse cardiovascular and cerebrovascular events (MACCE defined as a composite of all-cause mortality, non-fatal MI, non-fatal stroke, ischemia-driven target lesion revascularization and target vessel revascularization were recorded.Over a mean follow-up period of 2.2±1.6 years, 94 MACCEs occurred with an event rate of 14.1%. The rates of MACCE and all-cause mortality were 9.7% and 5.2%, respectively, in the no organ damage group; 21.3% and 21.3% in CI-AKI group; 18.5% and 14.6% in HLI group; and 57.7% and 50.0% in combined CI-AKI and HLI group. Survival probability plots of composite MACCE and all-cause mortality revealed that the combined CI-AKI and HLI group was associated with the worst prognosis (p<0.0001 for both.Combined CI-AKI after index procedure and HLI on admission is associated with poor clinical outcomes in patients with STEMI who underwent primary PCI. (INTERSTELLAR ClinicalTrials.gov number, NCT02800421..

  12. Seventeenth nuclear accident dosimetry intercomparison study: August 11-15, 1980

    International Nuclear Information System (INIS)

    Swaja, R.E.; Greene, R.T.

    1981-04-01

    The Seventeenth Nuclear Accident Dosimetry Intercomparison Study was conducted August 11-15, 1980, at the Oak Ridge National Laboratory. Nuclear criticality accidents with three different neutron and gamma ray energy spectra were simulated by operating the Health Physics Research Reactor in the pulse mode. Participants from 13 organizations exposed dosimeters set up as area monitors and mounted on phantoms for personnel monitoring. Analysis of experimental results reported by participants showed that less than 60% of the neutron dose measurements using foil activation, thermoluminescent, or sodium activation methods and less than 20% of the gamma dose measurements using thermoluminescent dosimeters met nuclear criticality accident dosimetry guidelines which suggest accuracies of +-25% for neutron dose and +-20% for gamma dose. This indicates that continued development and evaluation of criticality accident dosimetry systems for area and personnel monitoring are required to improve measurement accuracy so that existing standards can be met

  13. Practicing between earth and heaven: women healers in seventeenth-century Bologna

    Science.gov (United States)

    Pomata, G

    1999-01-01

    In the highly stratified medical system of seventeenth-century Bologna, women healers occupied a low-rank position. Officially women could practice medicine only as midwives or as holders of permits for the sale of patent medicines. Women were a relatively marginal group even within unauthorized medical practice. Of the criminal proceedings against unlicensed healers only 12% were directed against women. In contrast, women were prominent in religious healing--as shown by the record of healing miracles attributed to female saints, and the importance of female convents as centers of supernatural healing. The different status of women in each case might be related to the different role of the body in lay and religious medical practices. While contact with the bodies> of the saints was absolutely central in religious healing, body> was considered a mark of inferiority in lay medical practice.

  14. The purchase of fruitfulness: assisted conception and reproductive disability in a seventeenth-century comedy.

    Science.gov (United States)

    Belling, Catherine

    2005-01-01

    The relationships between socioeconomic and biogenetic reproduction are always socially constructed but not always acknowledged. These relationships are examined as they apply to an instance of infertility and assisted reproduction presented in a seventeenth-century English play, Thomas Middleton's 1613 comedy, A Chaste Maid in Cheapside. Middleton's satirization of the effects of secrecy on the category of reproductive disability is analyzed and its applicability to our own time considered. The discussion is in four parts, focusing on: the attribution of disabled status to one member of the couple, the wife; the use of this attribution to protect the husband's reputation for sexual and reproductive health; the concealment of the nature of assisted reproduction; and the interests of the child conceived with such assistance.

  15. REMOTE REGISTRY EDITOR

    Directory of Open Access Journals (Sweden)

    Bambang Kelana Simpony

    2016-03-01

    Full Text Available Abstract - Permissions setting on a computer is necessary. This is an effort that is not easy to change the system configuration or settings changed by the user. With a network of computers, of course, permissions setting do not need to be done one by one manually. Because in a computer network course there are many collection of computers connected together. Permissions setting so that the system can use the client-server applications that access restrictions can be done effectively. As the implementation of client-server applications can be created using Visual Basic 6.0. This language has been able to access the socket on the Windows operating system, named Winsock API that supports TCP / IP. This protocol is widely used because of the reliability of client-server application programming. The application is divided into two main applications, namely the client and server program name with the name of the Receiver Sender program. Receiver function receives instructions restriction of access rights Sender and send reports to the Sender process execution. While Sender function to send instructions restrictions permissions via the Registry to the Receiver. And after the test, the application can block important features available in the Windows operating system. So it is expected that these applications can help in permissions setting on a computer network. Keywords: Registry, Winsock API, TCP/IP, Socket, Protocol, Networking Abstrak - Pengaturan hak akses di suatu komputer sangat diperlukan. Hal ini merupakan salah satu upaya agar konfigurasi sistem tidak mudah dirubah atau diganti pengaturannya oleh pengguna. Dengan adanya jaringan komputer, tentunya pengaturan hak akses tidak perlu dilakukan satu-satu secara manual. Karena dalam suatu jaringan komputer pastinya terdapat banyak kumpulan komputer yang saling terhubung. Sehingga pengaturan hak akses bisa menggunakan sistem aplikasi client-server agar pembatasan hak akses bisa dilakukan dengan

  16. The Danish Schizophrenia Registry

    DEFF Research Database (Denmark)

    Baandrup, Lone; Cerqueira, Charlotte; Haller, Lea

    2016-01-01

    Aim of database: To systematically monitor and improve the quality of treatment and care of patients with schizophrenia in Denmark. In addition, the database is accessible as a resource for research. Study population: Patients diagnosed with schizophrenia and receiving mental health care...... to the data for use in specific research projects by applying to the steering committee. Conclusion: The Danish Schizophrenia Registry represents a valuable source of informative data to monitor and improve the quality of care of patients with schizophrenia in Denmark. However, continuous resources and time...

  17. [Establishment and functioning of the Vascular Registry in Hungary].

    Science.gov (United States)

    Menyhei, Gábor; Simó, Gábor; Szeberin, Zoltán; Bíró, Gábor; Kováts, Tamás

    2014-05-11

    Randomized controlled trials provide the best evidence in clinical trials; however, they do have limitations. In order to evaluate the effectiveness of treatments, population based registries may also yield useful information about the actual practice and they may enable users to carry out a dynamic follow-up. To evaluate the outcome of vascular procedures, the Vascular Registry in Hungary has been established in 2002. This article presents the establishment and functioning of the Vascular Registry and provides information about scientific results obtained during the past years. The Vascular Registry is an internet based database with on-line input. The backup server is provided by the National Institute for Quality and Organizational Development in Healthcare and Medicines. The database collects data in three different fields: interventions for carotid artery, aneurysm (any type) and lower extremity vascular diseases. Twenty five vascular surgical units record interventions in the registry, which corresponds to two thirds of the whole activity. Since joining the Vascunet Group of the European Society for Vascular Surgery, the registry has contributed to several publications based on evaluation of a large common dataset in different fields of vascular surgery. A validation process has been recently performed which confirmed the internal and external validity of the database. The authors conclude that despite unsolved problems related to financing issues, the Vascular Registry has proved to be a useful tool during the past years. In order to take advantage of the registry to its fullest, measures should be taken to achieve a more complete data recording, increase publication activity on the national dataset, improve the flow of information during operation and develop a system of regular feedback.

  18. Pseudonyms for cancer registries.

    Science.gov (United States)

    Pommerening, K; Miller, M; Schmidtmann, I; Michaelis, J

    1996-06-01

    In order to conform to the rigid German legislation on data privacy and security we developed a new concept of data flow and data storage for population-based cancer registries. A special trusted office generates a pseudonym for each case by a cryptographic procedure. This office also handles the notification of cases and communicates with the reporting physicians. It passes pseudonymous records to the registration office for permanent storage. The registration office links the records according to the pseudonyms. Starting from a requirements analysis we show how to construct the pseudonyms; we then show that they meet the requirements. We discuss how the pseudonyms have to be protected by cryptographic and organizational means. A pilot study showed that the proposed procedure gives acceptable synonym and homonym error rates. The methods described are not restricted to cancer registration and may serve as a model for comparable applications in medical informatics.

  19. Cherry blossom phenological data since the seventeenth century for Edo (Tokyo), Japan, and their application to estimation of March temperatures

    Science.gov (United States)

    Aono, Yasuyuki

    2015-04-01

    The changes in March mean temperatures in Edo (Tokyo), Japan, since the seventeenth century, were reconstructed using phenological data for the cherry blossoms of Prunus jamasakura deduced from old diaries and chronicles. The observations of the time of full blossoming and of cherry blossom viewing parties were acquired and used to construct a full-blossoming phenological data series for P. jamasakura. Phenological data from 207 of the years from 1601 to 1905 were used for this study. The reconstructed temperatures suggested the existence of two cold periods (the second half of the seventeenth century and the beginning of the nineteenth century), during which times the estimated March mean temperatures were about 4 °C and 5 °C, respectively. These two cold periods at Edo coincided with those reconstructed at Kyoto in previous studies. These cold periods coincided with two less extreme periods, the Maunder and Dalton minima, in the long-term solar variation cycle.

  20. The roofs of Wren and Jones: a seventeenth-century migration of technical knowledge from Italy to England

    OpenAIRE

    Simona Valeriani

    2006-01-01

    Seventeenth-century English architecture saw the introduction of a new style, influenced by continental Europe, and driven, to a large extent, by the work of Inigo Jones and Christopher Wren. But along with the aesthetic novelty came novel building techniques; construction methods embedded within the stylistic changes showing that the continental influence was felt as much within the structures of the buildings as it was upon their façades. Focussing here on the methods used to construct wood...

  1. Girls' education in the late sixteenth and early seventeenth centuries in England and Wales : a study of attitudes and practice

    OpenAIRE

    Bowden, Caroline Mary Kynaston

    1996-01-01

    This thesis provides a study of attitudes and practice in respect of female education in England and Wales in the late sixteenth and early seventeenth centuries. It begins with a review of primary and secondary sources, and throughout draws substantially upon personal documents consulted in collections of family papers covering a wide geographical area. These documents, it is argued are broadly representative of gentry families. Chapter Two examines the education of daughters; Chapter Three t...

  2. Electronic Patient Registries Improve Diabetes Care and Clinical Outcomes in Rural Community Health Centers

    Science.gov (United States)

    Pollard, Cecil; Bailey, Kelly A.; Petitte, Trisha; Baus, Adam; Swim, Mary; Hendryx, Michael

    2009-01-01

    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…

  3. Qualitative novelty in seventeenth-century science: Hydrostatics from Stevin to Pascal.

    Science.gov (United States)

    Chalmers, Alan F

    2015-06-01

    Two works on hydrostatics, by Simon Stevin in 1586 and by Blaise Pascal in 1654, are analysed and compared. The contrast between the two serves to highlight aspects of the qualitative novelty involved in changes within science in the first half of the seventeenth century. Stevin attempted to derive his theory from unproblematic postulates drawn from common sense but failed to achieve his goal insofar as he needed to incorporate assumptions involved in his engineering practice but not sanctioned by his postulates. Pascal's theory went beyond common sense by introducing a novel concept, pressure. Theoretical reflection on novel experiments was involved in the construction of the new concept and experiment also provided important evidence for the theory that deployed it. The new experimental reasoning was qualitatively different from the Euclidean style of reasoning adopted by Stevin. The fact that a conceptualization of a technical sense of pressure adequate for hydrostatics was far from obvious is evident from the work of those, such as Galileo and Descartes, who did not make significant moves in that direction. Copyright © 2015 Elsevier Ltd. All rights reserved.

  4. Paolo Sarpi’s vow of obedience: catholic political thought in early seventeenth-century Venice

    Directory of Open Access Journals (Sweden)

    Kainulainen, Jaska

    2016-06-01

    Full Text Available The aim of this paper is to study the idea of obedience in early-modern Catholic political thought. I focus on early seventeenth-century Venice and on one of its leading political thinkers, Paolo Sarpi. I argue that for Sarpi and the Venetian nobility obedience was a religious, Catholic concept, which they nonetheless applied to a secular system of governance; notwithstanding their refusal to obey the papal ban during the interdict of Venice in 1606-1607, Venetians regarded obedience as an act of piety and an indispensable element of civic life.El objetivo de este artículo es estudiar la idea de obediencia en el pensamiento político católico de la edad moderna, en particular en Venecia en el siglo XVII y en Paolo Sarpi, uno de sus pensadores políticos más importantes. Este artículo argumenta que para Sarpi y la nobleza la obediencia era un concepto católico, que a pesar de ello, aplicaron a un sistema de gobierno secular. A pesar de su negativa a obedecer la prohibición papal durante el interdicto de Venecia en 1606-1607, los venecianos consideraban la obediencia como un acto de piedad y un elemento indispensable de la vida cívica.

  5. Differences in the Korea Acute Myocardial Infarction Registry Compared with Western Registries

    Science.gov (United States)

    2017-01-01

    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

  6. PCCR: Pancreatic Cancer Collaborative Registry

    Science.gov (United States)

    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.

    2011-01-01

    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

  7. Review of patient registries in dermatology.

    Science.gov (United States)

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

    2016-10-01

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

  8. A multidisciplinary approach for the conservation of a building of the seventeenth century

    Science.gov (United States)

    Angelini, E.; Grassini, S.; Corbellini, S.; Parvis, M.; Piantanida, M.

    2010-09-01

    A long-term multidisciplinary conservation study is actually in progress inside the Villa della Regina, a prestigious Savoy residence built in the seventeenth century and recently restored. The walls of some rooms of the Villa are decorated with precious tin-mercury mirrors, that are baked with a reflective coating constituted of a tin-mercury compound surrounded by liquid mercury. The reflective layer is very soft, thus any restoration is difficult to be performed and can lead to a complete destruction of the artifact. Amalgam corrosion is a very slow process and, although there is no way to prevent the oxidation of the reflective layer, the conservation state of the artifacts may be improved by keeping them in a controlled environment. For this reason, a monitoring system has been designed and installed that is based on a wireless network of extremely compact sensors, for temperature and relative humidity measurements. The sensors have been specifically designed to satisfy the requirements for use in cultural heritage field and the system allows one to automatically collect the data that can be analyzed with the final aim to establish a correlation between the environmental conditions and the conservation state of the artifacts. A restoration has been carried out by producing in situ an amalgam inlay on the corroded area to slow down the release of liquid mercury in order to avoid also possible unsafe conditions for staff and visitors. In addition, a sensor has been developed which is based on a prototypical plastic optical fiber for the detection of low concentration Hg vapors to ensure the safe conditions in the Villa rooms. The sensor is being tested in laboratory.

  9. Danish National Lymphoma Registry

    Directory of Open Access Journals (Sweden)

    Arboe B

    2016-10-01

    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

  10. The value of trauma registries.

    Science.gov (United States)

    Moore, Lynne; Clark, David E

    2008-06-01

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

  11. Danish Prostate Cancer Registry

    DEFF Research Database (Denmark)

    Helgstrand, J Thomas; Klemann, Nina; Røder, Martin Andreas

    2016-01-01

    of the prostate (TUR-Ps), and the remaining 22,028 (13.6%) specimens were derived from radical prostatectomies, bladder interventions, etc. A total of 48,078 (42.2%) males had histopathologically verified prostate cancer, and of these, 78.8% and 16.8% were diagnosed on prostate biopsies and TUR-Ps, respectively....... FUTURE PERSPECTIVES: A validated algorithm was successfully developed to convert complex prostate SNOMED codes into clinical useful data. A unique database, including males with both normal and cancerous histopathological data, was created to form the most comprehensive national prostate database to date...

  12. “Wherefore She Made Suit”: African Women’s Religious and Spiritual Determinism in Sixteenth and Seventeenth Century England

    Directory of Open Access Journals (Sweden)

    Tamara Lewis

    2017-11-01

    Full Text Available Historical evidence of early modern English religious communities demonstrate that culturally negative perceptions of skin color and ethnicity contributed to theological notions of black inferiority which supported societal hierarchies based on racial and gender discrimination. This essay analyzes three accounts of a group typically ignored by religious scholars on early modern England: sixteenth and seventeenth century African women. Despite living in a period that arguably witnessed the ideological birth and development of the racial construct in tandem with British colonialist and imperialist expansionism, these women defiantly crafted their own brand of spiritual determinism to wield personal agency in the face of racist theological discourse, ecclesiastical institutions, and legal authorities.

  13. The Danish Lung Cancer Registry

    DEFF Research Database (Denmark)

    Jakobsen, Erik; Rasmussen, Torben Riis

    2016-01-01

    AIM OF DATABASE: The Danish Lung Cancer Registry (DLCR) was established by the Danish Lung Cancer Group. The primary and first goal of the DLCR was to improve survival and the overall clinical management of Danish lung cancer patients. STUDY POPULATION: All Danish primary lung cancer patients since...... 2000 are included into the registry and the database today contains information on more than 50,000 cases of lung cancer. MAIN VARIABLES: The database contains information on patient characteristics such as age, sex, diagnostic procedures, histology, tumor stage, lung function, performance...... as a source for research regarding lung cancer in Denmark and in comparisons with other countries....

  14. Conceptual Metaphor in Discourses of Women and Marriage in Seventeenth-Century Comedy

    Directory of Open Access Journals (Sweden)

    Csenge Aradi

    2014-10-01

    Full Text Available Conceptual metaphors reflect general conceptions of women and marriage in seventeenth-century comedy. Through the comparison of Molière’s The School for Husbands (1661 and The School for Wives (1662 with Wycherley’s The Country Wife (1675, the author of the present paper analyzes metaphors depicting women’s position and marriage in contemporary English and French society. The cognitive linguistic analysis (based on Johnson & Lakoff, 1980; Kövecses, 2005; 2010 was complemented with elements of Sociocriticism (Duchet, 1979, an approach that defines text as a social act. Sociocriticism claims that literary texts mirror the reality of their age, and they therefore need to be interpreted according to their own socio-cultural context. Women of the 1600s had an inferior status within the dominant male discourse, and this fact is unambiguously manifested in the metaphors extracted from the comedies. However, there are some considerable differences in the realization of these metaphors in the analyzed plays. First, metaphors in The Country Wife are visually more ingenuous than those applied in The School for Husbands and The School for Wives. Second, metaphors in Wycherley’s play are closely connected to the everyday life of the characters (i.e., members of the English gentry and aristocracy, as opposed to Molière’s comedies, in which metaphors are conventional both on the general and specific level, and thus provide little culture-specific information on the issue. A third difference is that metaphorical correspondences in The Country Wife are made explicit, and they run through the whole of the play, establishing coherence to the discourse. In contrast, the two French plays do not unbind any of the relevant metaphors. As a conclusion, it can be stated that whereas in The Country Wife the representation of women and marriage is based on extended conceptual metaphors reflecting contemporary socio-cultural context, in The School for Husbands

  15. Fernando de Almeida (d. 1660: Tradition and Innovation in Mid-Seventeenth-Century Portuguese Sacred Music

    Directory of Open Access Journals (Sweden)

    Vaz, João

    2015-12-01

    Full Text Available The Library of the Ducal Palace at Vila Viçosa preserves three large choirbooks of polyphonic repertoire intended for Holy Week, prepared between 1735 and 1736 by a copyist of the Patriarchal Church. These choirbooks contain all the known extant works by Fernando de Almeida (died in 1660. When comparing the music of Fernando de Almeida with that of his near contemporary João Lourenço Rebelo (1610-1661, the different trends in Portuguese early- to mid-seventeenth-century church music become clear, especially if viewed in the light of the acknowledged aesthetic and compositional premises explained in the 1649 Defensa de la mvsica moderna by King João IV. Rebelo’s concertato works incline towards the style of north-Italian composers. The ingenuity of Fernando de Almeida’s style, which is particularly noticeable in his eight-voice Holy Week responsories, lays in the integration of prominent Baroque features within the mould of Iberian Mannerist tradition.La Biblioteca del Palacio Ducal de Vila Viçosa posee tres grandes libros de coro con repertorio polifónico destinado a la Semana Santa, preparados entre 1735 y 1736 por un copista de la Iglesia Patriarcal. Estos libros de coro contienen todas las obras de Fernando de Almeida (m. 1660 que hayan sobrevivido hasta los días de hoy. La comparación de la música de Fernando de Almeida con la de su cási contemporáneo João Lourenço Rebelo (1610-1661 evidencia las distintas orientaciones en la música sacra portuguesa de principios a mediados del siglo XVII, especialmente cuando observadas bajo las premisas estéticas y composicionales explanadas en la Defensa de la mvsica moderna (1649 del Rey D. João IV. El estilo concertato de Rebelo se acerca de los compositores del Norte de Italia. La inventiva del estilo de Fernando de Almeida, particularmente notable en sus Responsorios a ocho voces para la Semana Santa, incorpora prominentes características barrocas en el molde de la tradici

  16. A Colonial Cacicazgo: the Mendozas of Seventeenth-Century Tepexí de la Seda

    Directory of Open Access Journals (Sweden)

    Rik Hoekstra

    2010-10-01

    Full Text Available The cacicazgo, or indigenous lordship, was a pivotal institution in colonial Mexican Indian pueblos. Caciques, or Indian nobles, played a role, both in the largely indigenous world of the pueblo and in the regional economy that was dominated by Spaniards. This subject of this essay is the analysis of the evolution and daily operation and of a cacicazgo from the Indian settlement of Tepexí de la Seda near the city of Puebla de los Ángeles and the life of its caciques in the sixteenth and seventeenth centuries. In the sixteenth century the cacicazgo was in upheaval because of discord between the cacicazgos and their dependent Indians. A number of long-running accounts from the 1620s record in detail the daily operations of the cacicazgo of Doña Ana de Santa Bárbara of the Mendoza family, thus illustrating how caciques negotiated their positions and coped with their lives and the changes in it.   Resumen: Un cacicazgo colonial: los Mendoza de Tepexí de la Seda en el siglo 17 El cacicazgo, o señorío indígena, fue una institución fundamental en los pueblos indios de México colonial. Los caciques, o nobles indígenas, desempeñaron un papel tanto en el mundo en gran parte indígena del pueblo y en la economía regional dominada entonces por los españoles. El tema de este ensayo es el análisis de la evolución y operación cotidianas de un cacicazgo del asentamiento indígena de Tepexí de la Seda cerca de la ciudad de Puebla de los Ángeles y la vida de sus caciques en los siglos 16 y 17. En el siglo 16, el cacicazgo vivió tiempos convulsos debido a los conflictos entre los caciques y sus dependientes indios. Varias extensas cuentas de los años veinte del siglo 17 registran en detalle las operaciones diarias del cacicazgo de doña Ana de Santa Bárbara, de la familia Mendoza, mostrando así cómo negociaban los caciques sus posiciones y se adaptaban a los cambios en sus vidas.

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

    Data.gov (United States)

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

  18. The danish multiple sclerosis registry

    DEFF Research Database (Denmark)

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

    2011-01-01

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

  19. Registries in European post-marketing surveillance

    DEFF Research Database (Denmark)

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

    2017-01-01

    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...... registries and 71% of the registries had a primary safety objective. Most commonly reported issues with registries were delayed time to start and low patient accrual rates. CONCLUSIONS: The delays found in getting new registries up and running support the need to improve the timeliness of data collection...

  20. Forensic Analysis of Windows Registry Against Intrusion

    OpenAIRE

    Haoyang Xie; Keyu Jiang; Xiaohong Yuan

    2012-01-01

    Windows Registry forensics is an important branch of computer and network forensics. Windows Registry is often considered as the heart of Windows Operating Systems because it contains allof the configuration setting of specific users, groups, hardware, software, and networks. Therefore, Windows Registry can be viewed as a gold mine of forensic evidences which could be used in courts. This paper introduces the basics of Windows Registry, describes its structure and its keys and subkeys thathav...

  1. Data Quality in Rare Diseases Registries.

    Science.gov (United States)

    Kodra, Yllka; Posada de la Paz, Manuel; Coi, Alessio; Santoro, Michele; Bianchi, Fabrizio; Ahmed, Faisal; Rubinstein, Yaffa R; Weinbach, Jérôme; Taruscio, Domenica

    2017-01-01

    In the field of rare diseases, registries are considered power tool to develop clinical research, to facilitate the planning of appropriate clinical trials, to improve patient care and healthcare planning. Therefore high quality data of rare diseases registries is considered to be one of the most important element in the establishment and maintenance of a registry. Data quality can be defined as the totality of features and characteristics of data set that bear on its ability to satisfy the needs that result from the intended use of the data. In the context of registries, the 'product' is data, and quality refers to data quality, meaning that the data coming into the registry have been validated, and ready for use for analysis and research. Determining the quality of data is possible through data assessment against a number of dimensions: completeness, validity; coherence and comparability; accessibility; usefulness; timeliness; prevention of duplicate records. Many others factors may influence the quality of a registry: development of standardized Case Report Form and security/safety controls of informatics infrastructure. With the growing number of rare diseases registries being established, there is a need to develop a quality validation process to evaluate the quality of each registry. A clear description of the registry is the first step when assessing data quality or the registry evaluation system. Here we report a template as a guide for helping registry owners to describe their registry.

  2. Theatrical recreations of Don Quixote by Miguel de Cervantes Saavedra in France (from the seventeenth to the twenty-first century: review and new data

    Directory of Open Access Journals (Sweden)

    Emmanuel Marigno

    2012-12-01

    Full Text Available This article examines the quixotic dramatic recreations in France. After a synthesis that goes from the seventeenth to 2000, we provide a set of information about rewrites of the years 2000-2011, in order to reveal the main aesthetic and ethical specificities of contemporary quixotic rewrites.

  3. "How Could They Believe That?": Explaining to Students Why Accusation of Witchcraft Made Good Sense in Seventeenth-Century New England.

    Science.gov (United States)

    Godbeer, Richard

    2003-01-01

    Explains that students must understand that, due to the beliefs of the time in New England, accusing people of witchcraft during the seventeenth century was plausible. Provides background information on societal beliefs centered upon witchcraft and the supernatural, as well as the process of accusing people of being witches. (CMK)

  4. Colonial careers : Johan Maurits van Nassau-Siegen, Rijckloff Volckertsz. van Goens and career-making in the Seventeenth-Century Dutch Empire

    NARCIS (Netherlands)

    Odegard, E.L.L.

    2018-01-01

    How could an individual attain high rank in the Seventeenth-Century Dutch colonial empire and once appointed, how could one retain high office? This dissertation seeks to answer these questions by means of a detailed case-study of the careers of two colonial governors: Johan Maurits van

  5. Grammatical change and non-change in historical narratives during the transition from the Seventeenth to the Eighteenth Century

    Directory of Open Access Journals (Sweden)

    José Luis GIRÓN ALCONCHEL

    2013-03-01

    Full Text Available In this paper we attempt to establish the evolutionary status of syntactic changes that affect the argumentative, sentential and textual cohesion in the discursive tradition of historical narrative in three texts from 1684, 1725 and 1746, respectively. Direct object markings by the preposition a and indirect object by clitic doubling maintain their frequencies; leísmo and the pronominal enclisis progressively decrease. Locative ser and transitive haber disappear after 1684; the collation of elements between the auxiliary and the participle of compound tenses reaches 1725, and so do the indicative value of the –ra form and the future subjunctive. The consecutive sentences show situations of variation driven by discursive activity rather than by changes. There exists no border in syntactic evolution between the seventeenth and eighteenth centuries; just a turning point around 1725, at most.

  6. Beauty and simplicity: the power of fine art and moral teaching on education in seventeenth-century Holland.

    Science.gov (United States)

    Dekker, J J H

    2009-04-01

    Seventeenth century Dutch genre painting played a major role in the promotion of the pursuit of family and educational virtues. Packing moralistic messages in fine paintings was considered as a very effective moralistic communication policy in a culture in which sending such moralising paintings and drawings on education and domestic virtues, so contributing to the reconciliation of the existing tensions, or, in the words of Simon Schama, embarrassment between beauty and the promoted virtues of frugality and simplicity. A broad middle class created its own private surrounding in which morality and enjoying the beauty of moralising on the family and parenting went together, as is made clear by the analysis of a series of representative images. Dutch parents, moralists, and painters knew the power of beauty in moralising on the family.

  7. Mediators of trade and taste. Dealing with demand and quality uncertainty in the international art markets of the seventeenth century

    Directory of Open Access Journals (Sweden)

    Claartje Rasterhoff

    2015-12-01

    Full Text Available Early modern Antwerp-based art dealers exported a variety of luxury goods across Europe and beyond. They traded locally and globally in mass-produced and unique goods of fancy, in newly produced and resold items. Our contribution examines the business models of these dealers in order to better understand the extraordinary reach of the early modern international art trade and its cultural ramifications. The Forchondt and Musson art dealing firms serve as a case study to put into context the artistic exchanges between Southern and Northern Netherlands during the second half of the seventeenth century and we reveal how their business strategies (both on a cultural and economic level helped to overcome high levels of quality and demand uncertainty.

  8. Ergotism in Norway. Part 1: The symptoms and their interpretation from the late Iron Age to the seventeenth century.

    Science.gov (United States)

    Alm, Torbjørn; Elvevåg, Brita

    2013-03-01

    Ergotism is a horrendous disease with grotesque symptoms caused by ingesting specific ergot alkaloids. Mass poisoning episodes are attributable to consumption of grain - usually rye - infected with the fungus Claviceps purpurea. By focusing on possible cases of ergotism, we re-examine Norwegian history from the sagas through to the end of the seventeenth century. Our review - not intended to be exhaustive, or ex post facto to assign medical or psychiatric labels - draws attention to the very real possibility that many remarkable medical cases may have been the result of the ingestion of highly poisonous and psychoactive food substances. Where possible we highlight explanations given at the time - often rooted in religion or demonology - to explain the disease.

  9. Ars scientia mores: science comes to English dentistry in the seventeenth century. 1. Medical publications and the Royal Society.

    Science.gov (United States)

    Bishop, M

    2013-02-01

    During the late seventeenth century scientific knowledge came dentistry, much of it through the activity of the new Royal Society, which was initiated by gatherings in London and Oxford from 1645 and formally established in 1660 after the restoration of the monarchy. The Society received its first charter from Charles II in 1662 and from 1665 onwards published its Philosophical Transactions. This paper outlines items published in that journal, and other relevant scientific publications of the century, applicable to dentistry. A companion paper employs Allen's dental treatise, The operator for the teeth, first published in York in 1685 to provide the evidence that he was aware of several of these scientific findings of his day.

  10. Elzevirian Republics, wise merchants, and new perspectives on Spain and Portugal in the seventeenth-century Dutch Republic

    Directory of Open Access Journals (Sweden)

    Sina Rauschenbach

    2013-05-01

    Full Text Available Between 1625 and 1649, the Leiden publishing house Elzevir issued a series of thirty-five descriptions of all European, a selection of non-European, and three ancient states, that became known as the ‘Elzevirian Republics’. This essay focuses on two of these ‘Republics’, Johannes de Laet’s descriptions of Spain and Portugal. I argue that these books convey an attitude towards geopolitics that is best understood in the light of Caspar Barlaeus’s ideal of the ‘wise merchant’ (mercator sapiens and the historical regent-merchant culture in seventeenth-century Amsterdam. The essay draws on recent scholarship in the history of knowledge, commerce, and the pre-history of objectivity.

  11. Report on the results of the seventeenth medical examination of atomic bomb survivors resident in North America

    International Nuclear Information System (INIS)

    Usui, Shizuteru; Matsumura, Makoto; Yanagida, Jitsuro

    2010-01-01

    The seventeenth medical examination of A-bomb survivors resident in North America was carried out from September 16th through 30th and from October 7th through 21st, 2009, in the cities of Los Angeles, Honolulu, San Francisco, and Seattle. The total number of those who underwent the seventeenth medical examination was 394, 71 of whom were second-generation A-bomb survivors. As the survivors in North America are advancing in age, the average age of the examinees was 76.3 years. The examination items included an interview, clinical (including surgical and gynecological) examinations and physical measurement, transcutaneous measurement of arterial oxygen saturation, electrocardiography (ECG), and hematology, blood biochemistry, urine, and fecal occult blood reaction test and cervical cancer screening. The review of the medical history showed that hypertension was the most frequent in the survivors examined, with the prevalence of 57.6%. Previous history of malignant tumors was observed in 23.2% of the survivors examined, with major cancer sites being the prostate, mammary gland, colon, and uterus. As a result of the blood biochemistry test, 24.8% of the survivors examined were diagnosed with impaired glucose tolerance (IGT). Abnormal total cholesterol levels and thyroid dysfunction were found in 51.9% and 23.0% of the survivors examined, respectively. Analyses of the A-bomb survivors who underwent this examination showed no statistically significant associations between distance from the hypocenter and any disease or examination finding. A report providing the results of the medical examination and the necessity of undergoing closer examination, receiving medical treatment, and clinical follow-up, if any, was mailed to each examinee. (author)

  12. Evaluation of institutional cancer registries in Colombia

    Directory of Open Access Journals (Sweden)

    Luis Gabriel Cuervo

    1999-09-01

    Full Text Available The four primary objectives of this descriptive study were to: 1 design a quality-measurement instrument for institutional cancer registries (ICRs, 2 evaluate the existing ICRs in Colombia with the designed instrument, 3 categorize the different registries according to their quality and prioritize efforts that will efficiently promote better registries with the limited resources available, and 4 determine the institution with the greatest likelihood of successfully establishing Colombia's second population-based cancer registry. In 1990 the National Cancer Institute of Colombia developed 13 institution-based cancer registries in different Colombian cities in order to promote the collection of data from a large group of cancer diagnostic and treatment centers. During the first half of 1997, this evaluation reviewed 12 registries; one of the original 13 no longer existed. All of the Colombian institutions (hospitals that maintain institution-based cancer registries were included in the study. At each institution, a brief survey was administered to the hospital director, the registry coordinator, and the registrar (data manager. Researchers investigated the institutions by looking at six domains that are in standard use internationally. Within each domain, questions were developed and selected through the Delphi method. Each domain and each question were assigned weights through a consensus process. In most cases, two interviewers went to each site to collect the information. The university hospitals in Cali, Pereira, and Medellín had substantially higher scores, reflecting a good level of performance. Four of the 12 institutions had almost no cancer registry work going on. Five of the 12 hospital directors considered that the information provided by the cancer registries influenced their administrative decisions. Three of the registries had patient survival data. Four of the institutions allocated specific resources to operate their cancer

  13. The Danish Heart Failure Registry

    DEFF Research Database (Denmark)

    Schjødt, Inge; Nakano, Anne; Egstrup, Kenneth

    2016-01-01

    AIM OF DATABASE: The aim of the Danish Heart Failure Registry (DHFR) is to monitor and improve the care of patients with incident heart failure (HF) in Denmark. STUDY POPULATION: The DHFR includes inpatients and outpatients (≥18 years) with incident HF. Reporting to the DHFR is mandatory......: The main variables recorded in the DHFR are related to the indicators for quality of care in patients with incident HF: performance of echocardiography, functional capacity (New York Heart Association functional classification), pharmacological therapy (angiotensin converting enzyme/angiotensin II...

  14. The Danish National Prescription Registry

    DEFF Research Database (Denmark)

    Kildemoes, Helle Wallach; Toft Sørensen, Henrik; Hallas, Jesper

    2011-01-01

    ), contains information on dispensed prescriptions, including variables at the level of the drug user, the prescriber, and the pharmacy. Validity and coverage: Reimbursement-driven record keeping, with automated bar-code-based data entry provides data of high quality, including detailed information......Introduction: Individual-level data on all prescription drugs sold in Danish community pharmacies has since 1994 been recorded in the Register of Medicinal Products Statistics of the Danish Medicines Agency. Content: The register subset, termed the Danish National Prescription Registry (DNPR...

  15. On Domain Registries and Website Content

    DEFF Research Database (Denmark)

    Schwemer, Sebastian Felix

    2018-01-01

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

  16. National Suicide Registry Malaysia (NSRM).

    Science.gov (United States)

    Hayati, A N; Kamarul, A K

    2008-09-01

    To create a nationwide system to capture data on completed suicide in Malaysia i.e. the morbidity, geographic and temporal trends and the population at high risk of suicide. Data from this registry can later be used to stimulate and facilitate further research on suicide. This paper describes the rationale and processes involved in developing a national suicide registry in 2007. The diagnosis of suicide is based on the ICD-10 codes for fatal intentional self-harm (X60-X84). A case report form with an accompanying instruction manual had been prepared to ensure systematic and uniform data collection. State Forensic Pathologist's offices are responsible for data collection in their respective states, and in turn will submit the data to a central data management unit. Data collection began in July 2007 and currently in data cleaning process. Training for source data producers is ongoing. In 2008, the NSRM plans to involve university hospitals into its network as currently only Ministry of Health hospitals are involved. The NSRM will be launching its online application for case registration this year while an overview of results will be available via its public domain at www.nsrm.gov.my beginning 20 April 2008. To efficiently capture the data on suicide, a concerted effort between various agencies is needed. A lot of conceptual work and data base development remains to be done in order to position preventive efforts on a more solid foundation.

  17. Contemporary Antithrombotic Treatment in Patients with Non-valvular Atrial Fibrillation Undergoing Percutaneous Coronary Intervention: Rationale and Design of the Greek AntiPlatElet Atrial Fibrillation (GRAPE-AF) Registry.

    Science.gov (United States)

    Xanthopoulou, Ioanna; Dragona, Vasiliki-Maria; Davlouros, Periklis; Tsioufis, Costas; Iliodromitis, Efstathios; Alexopoulos, Dimitrios

    2018-04-20

    Approximately 5 to 7% of patients undergoing percutaneous coronary intervention (PCI) for the treatment of coronary artery disease require chronic oral anticoagulation (OAC) on top of aspirin and a P2Y 12 receptor antagonist, mainly due to non-valvular atrial fibrillation (AF). The advent of non-vitamin K antagonist oral anticoagulants (NOACs) increased treatment options, while there is cumulative evidence that dual combination of a NOAC and a P2Y 12 receptor antagonist attenuates risk of bleeding, compared to traditional triple therapy, consisting of a vitamin K antagonist (VKA), aspirin, and a P2Y 12 receptor antagonist, without significantly compromising efficacy. Greek AntiPlatElet Atrial Fibrillation (GRAPE-AF, NCT 03362788) is an observational, nationwide study of non-valvular AF patients undergoing PCI, planning to enroll over 1-year period > 500 participants in 25 tertiary and non-tertiary PCI centers in Greece. Key data to be collected pre-discharge include demographics, detailed past medical history, and antithrombotic and concomitant treatment. Patients will be followed up at 1, 6, and 12 months post hospital discharge. Αt each follow-up visit, data on antithrombotic treatment, ischemic, bleeding, and adverse events will be collected. Study's primary endpoint is clinically significant bleeding (Bleeding Academic Research Consortium, BARC ≥ 2) at 12 months, between VKAs and NOACs-treated patients, analyzed using Cox proportional hazards models, by an intention-to-treat principle. An independent endpoint committee will adjudicate all clinical events. This study aims at providing "real-world" information on current antithrombotic treatment patterns and clinical outcome of patients with non-valvular AF undergoing PCI.

  18. The invention of physical science intersections of mathematics, theology and natural philosophy since the seventeenth century : essays in honor of Erwin N. Hiebert

    CERN Document Server

    Richards, Joan L; Stuewer, Roger H

    1992-01-01

    Modern physical science is constituted by specialized scientific fields rooted in experimental laboratory work and in rational and mathematical representations. Contemporary scientific explanation is rigorously differentiated from religious interpretation, although, to be sure, scientists sometimes do the philosophical work of interpreting the metaphysics of space, time, and matter. However, it is rare that either theologians or philosophers convincingly claim that they are doing the scientific work of physical scientists and mathematicians. The rigidity of these divisions and differentiations is relatively new. Modern physical science was invented slowly and gradually through interactions of the aims and contents of mathematics, theology, and natural philosophy since the seventeenth century. In essays ranging in focus from seventeenth-century interpretations of heavenly comets to twentieth-century explanations of tracks in bubble chambers, ten historians of science demonstrate metaphysical and theological th...

  19. Challenges and opportunities for HSCT outcome registries: perspective from international HSCT registries experts.

    Science.gov (United States)

    Aljurf, M; Rizzo, J D; Mohty, M; Hussain, F; Madrigal, A; Pasquini, M C; Passweg, J; Chaudhri, N; Ghavamzadeh, A; Solh, H E; Atsuta, Y; Szer, J; Kodera, Y; Niederweiser, D; Gratwohl, A; Horowitz, M M

    2014-08-01

    Patient registries, frequently referred to as outcome registries, are 'organized systems' that use observational study methods to collect uniform data. Registries are used to evaluate specified outcomes for a population defined by a particular disease, condition or exposure that serves one or more predetermined scientific, clinical or policy purposes. Outcome registries were established very early in the development of hematopoietic SCT (HSCT). Currently, myriads of national and international HSCT registries collect information about HSCT activities and outcomes. These registries have contributed significantly to determining trends, patterns, treatment practices and outcomes. There are many different HSCT registries, each with different aims and goals; some are led by professional organizations, others by government authorities, health care providers or third parties. Some registries simply assess activity and others study outcomes. These registries are complementary and are gradually developing interoperability with each other to expand future collaborative research activities. A key development in the last few years was the incorporation of recommendations into the World Health Organization guiding principles on cell, tissue and organ transplantation. The data collection and analysis should be an integral part of therapy and an obligation rather than a choice for transplant programs. This article examines challenges in ensuring data quality and functions of outcome registries, using HSCT registries as an example. It applies to all HSCT-related data, but is predominantly focused on HSCT registries of professional organizations.

  20. Private provider participation in statewide immunization registries

    Directory of Open Access Journals (Sweden)

    Cowan Anne E

    2006-02-01

    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

  1. Knowledge and practice pictured in the artist’s studio. The ‘art lover’ in the seventeenth-century Netherlands

    OpenAIRE

    Lara Yeager-Crasselt

    2017-01-01

    This article examines the long overlooked representation of the ‘art lover’, or liefhebber, in the artist’s studio in the seventeenth-century Netherlands and the ways in which the liefhebber’s image coalesced with a larger cultural discourse of connoisseurship, amateurship, and artistic practice. It situates these images in the iconographic tradition of the Flemish collector’s cabinet, and demonstrates how the values inherent to the konstkamer became part of the visual language and meaning of...

  2. The problems of the late seventeenth century in Bahia according to the writings of Gregorio de Matos and Sebastião da Rocha Pita

    OpenAIRE

    Cintia Goncalves Gomes Oliveira

    2017-01-01

    This paper aims to study the complex economic situation faced by Bahia in the late seventeenth century and its consequences in society through documents produced by two characters who lived that moment, but in situations and with very different points of view: the poet Gregorio de Matos (1636 - 1696) and the historian Sebastião da Rocha Pita (1660 - 1738). The analysis of his writings is important in that they present readings of how the crisis affected the inhabitants of the R...

  3. Service registry design: an information service approach

    NARCIS (Netherlands)

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

    2010-01-01

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

  4. 50 CFR 600.1410 - Registry process.

    Science.gov (United States)

    2010-10-01

    ... 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...

  5. The Danish National Chronic Lymphocytic Leukemia Registry

    DEFF Research Database (Denmark)

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

    2016-01-01

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

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

    CERN Document Server

    Carvey, Harlan

    2011-01-01

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

  7. Central registry in psychiatry: A structured review

    Directory of Open Access Journals (Sweden)

    Jyoti Prakash

    2014-01-01

    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.

  8. The Italian National Rare Diseases Registry.

    Science.gov (United States)

    Taruscio, Domenica; Kodra, Yllka; Ferrari, Gianluca; Vittozzi, Luciano

    2014-04-01

    Rare disease registries are a priority at European level and specific actions are being implemented by the European Commission to support their development.In Italy, a National Registry of rare diseases has been established in 2001 as a network of regional registries. The latter have gradually been established and the full coverage of the Italian territory was attained during 2011. Here we describe the basic features of the National Registry of rare diseases; the activities carried out to promote consistent operations in the regional registries; and the overall quality and composition of the records collected. After a validation process, including removal of duplicate records, 110,841 records of patients with rare diseases, single and with group denominations, are stored in the National Registry of rare diseases. They correspond to the overall diagnoses communicated to national registry by regional registries up to 30 June 2012.The quality of the data collected by the the National Registry of rare diseases has been assessed with respect to completeness and consistency of procedures. Variables characterising case and diagnosis showed a very limited number of missing values. Records reported at least one case of 485 rare conditions. To date, the National Registry of rare diseases is a surveillance system with the main objective of producing epidemiologic evidence on rare diseases in Italy, and of supporting policy making and health services planning.Data quality still represents a limitation for any sound epidemiological estimate of rare diseases in Italy. However, improvements of the quality of collected data and the completeness of case notifications should be strengthened.

  9. 76 FR 20690 - International Consortium of Orthopedic Registries; Public Workshop

    Science.gov (United States)

    2011-04-13

    ... HUMAN SERVICES Food and Drug Administration International Consortium of Orthopedic Registries; Public... Administration (FDA) is announcing a public workshop entitled ``International Consortium of Orthopedic Registries... orthopedic registries that have orthopedic implant information and create a research network to advance the...

  10. Does the presence of an emergency physician influence pre-hospital time, pre-hospital interventions and the mortality of severely injured patients? A matched-pair analysis based on the trauma registry of the German Trauma Society (TraumaRegister DGU®).

    Science.gov (United States)

    Bieler, Dan; Franke, Axel; Lefering, Rolf; Hentsch, Sebastian; Willms, Arnulf; Kulla, Martin; Kollig, Erwin

    2017-01-01

    The role of emergency physicians in the pre-hospital management of severely injured patients remains controversial. In Germany and Austria, an emergency physician is present at the scene of an emergency situation or is called to such a scene in order to provide pre-hospital care to severely injured patients in approximately 95% of all cases. By contrast, in the United States and the United Kingdom, paramedics, i.e. non-physician teams, usually provide care to an injured person both at the scene of an incident and en route to an appropriate hospital. We investigated whether physician or non-physician care offers more benefits and what type of on-site care improves outcome. In a matched-pair analysis using data from the trauma registry of the German Trauma Society, we retrospectively (2002-2011) analysed the pre-hospital management of severely injured patients (ISS ≥16) by physician and non-physician teams. Matching criteria were age, overall injury severity, the presence of relevant injuries to the head, chest, abdomen or extremities, the cause of trauma, the level of consciousness, and the presence of shock. Each of the two groups, i.e. patients who were attended by an emergency physician and those who received non-physician care, consisted of 1235 subjects. There was no significant difference between the two groups in pre-hospital time (61.1 [SD 28.9] minutes for the physician group and 61.9 [SD 30.9] minutes for non-physician group). Significant differences were found in the number of pre-hospital procedures such as fluid administration, analgosedation and intubation. There was a highly significant difference (ppre-hospital care. It shows, however, that there was no significant difference in mortality although patients who were attended by non-physician teams received fewer pre-hospital interventions with similar scene times. Copyright © 2016 Elsevier Ltd. All rights reserved.

  11. The Pan African Clinical Trials Registry: year one data analysis of the only African member of the World Health Organization Network of Primary Registries.

    Science.gov (United States)

    Abrams, Amber; Siegfried, Nandi

    2010-11-01

    Prospective registration in a clinical trial registry is mandatory for all clinical trial research intended for publication in any International Committee of Medical Journal Editors member journal. With the launch of the Pan African Clinical Trial Registry (PACTR) in September 2009, the first African member of the World Health Organization (WHO) Network of Primary Registers came into being as the only registry dedicated specifically to trials on the African continent. To examine the usefulness of PACTR as a resource for information on clinical trial activity in Africa, and to provide data on the African clinical trial landscape after the first year of a dedicated registry. Data was extracted from PACTR on 18 August 2010 on diseases investigated, intervention types, trial locations, principal investigator locations, and registration dates. Clinical trial registration is steadily increasing throughout the region, and there is evidence that the dedicated assistance of staff can facilitate further trial registration. An analysis of the country of origin of principal investigators shows that clinical trial work is increasingly being generated within the continent. Although the registry is in a nascent stage, its value as a resource can already be seen; by extracting data from the registry we can identify what trial work is being conducted in the region, where, and by whom, shedding light on the present trial landscape on the continent. PACTR is committed to increasing trial registration and awareness of the importance of registration, while also helping to harmonize national registry efforts across the African continent. © 2010 Blackwell Publishing Asia Pty Ltd and Chinese Cochrane Center, West China Hospital of Sichuan University.

  12. The Western Denmark Cardiac Computed Tomography Registry

    DEFF Research Database (Denmark)

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

    2015-01-01

    BACKGROUND: As a subregistry to the Western Denmark Heart Registry (WDHR), the Western Denmark Cardiac Computed Tomography Registry (WDHR-CCTR) is a clinical database established in 2008 to monitor and improve the quality of cardiac computed tomography (CT) in Western Denmark. OBJECTIVE: We...... positive and negative predictive values for both university (96%/99%) and nonuniversity centers (97%/99%). CONCLUSION: WDHR-CCTR provides ongoing prospective registration of all cardiac CTs performed in Western Denmark since 2008. Overall, the registry data have a high degree of completeness and validity...

  13. 76 FR 57742 - National Registry of Evidence-Based Programs and Practices

    Science.gov (United States)

    2011-09-16

    ... effectively and more rapidly into the general health care system. The National Registry of Evidence-based... be used in screening and selecting interventions, and provides guidance on the submission process... documentation to be used in the review. This additional documentation includes full-text copies of all articles...

  14. EPA Facility Registry Service (FRS): RBLC

    Data.gov (United States)

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

  15. EPA Facility Registry System (FRS): NCES

    Data.gov (United States)

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

  16. EPA Facility Registry Service (FRS): SDWIS

    Data.gov (United States)

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

  17. EPA Facility Registry Service (FRS): NCDB

    Data.gov (United States)

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

  18. EPA Facility Registry Service (FRS): BRAC

    Data.gov (United States)

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

  19. EPA Facility Registry Service (FRS): TRI

    Data.gov (United States)

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

  20. EPA Linked Open Data: Substance Registry Service

    Data.gov (United States)

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

  1. EPA Facility Registry Service (FRS): RCRA

    Data.gov (United States)

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

  2. EPA Facility Registry Service (FRS): LANDFILL

    Data.gov (United States)

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

  3. EPA Facility Registry Service (FRS): BIA

    Data.gov (United States)

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

  4. EPA Facility Registry Service (FRS): RMP

    Data.gov (United States)

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

  5. EPA Facility Registry Service (FRS): RADINFO

    Data.gov (United States)

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

  6. EPA Facility Registry Service (FRS): ICIS

    Data.gov (United States)

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

  7. Registries Help Moms Measure Medication Risks

    Science.gov (United States)

    ... Home For Consumers Consumer Updates Registries Help Inform Medication Use in Pregnancy Share Tweet Linkedin Pin it ... or epilepsy, pregnant women must often take prescription medication. Studies show that most women take at least ...

  8. EPA Facility Registry Service (FRS): ACRES

    Data.gov (United States)

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

  9. EPA Facility Registry Service (FRS): NEI

    Data.gov (United States)

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

  10. EPA Facility Registry Service (FRS): OIL

    Data.gov (United States)

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

  11. Veterans Affairs Central Cancer Registry (VACCR)

    Data.gov (United States)

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

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

    Data.gov (United States)

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

  13. Assessing Ontario's Personal Support Worker Registry

    Directory of Open Access Journals (Sweden)

    Audrey Laporte

    2013-08-01

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

  14. The Norwegian Multiple Sclerosis Registry and Biobank.

    Science.gov (United States)

    Myhr, K-M; Grytten, N; Torkildsen, Ø; Wergeland, S; Bø, L; Aarseth, J H

    2015-01-01

    Multiple sclerosis (MS) is a chronic inflammatory disease of the central nervous system with unknown cause and various benefits from disease modifying therapies. Systematic recording of data into national MS registries is therefore needed to optimize treatment and define the pathogenesis of the disease. The Norwegian MS Registry and Biobank was established for systematic collection of clinical and epidemiological data, as well as biological samples. Data collection is based on informed consent from the individual patients and recordings by treating neurologists. All researchers have, by application, access to data and biological samples from the Norwegian Multiple Sclerosis Registry and Biobank. By this combined effort from both patients and healthcare personnel, the Registry and Biobank aims to facilitate research for improved understanding of disease mechanisms and improved health care in MS. © 2015 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

  15. Substance Identification Information from EPA's Substance Registry

    Data.gov (United States)

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

  16. Airborne Hazards and Open Burn Pit Registry

    Science.gov (United States)

    ... problem if you are in a high security environment where this is disabled by a network policy. The Registry will work in JavaScript-enabled browsers such as: Google Chrome 17+ Mozilla Firefox 12+ Internet Explorer 10+ ...

  17. EPA Facility Registry System (FRS): NEPT

    Data.gov (United States)

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

  18. EPA Linked Open Data: Facility Registry Service

    Data.gov (United States)

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

  19. EPA Facility Registry Service (FRS): CAMDBS

    Data.gov (United States)

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

  20. ‘Pretos’ and ‘Pardos’ between the Cross and the Sword: Racial Categories in Seventeenth Century Brazil

    Directory of Open Access Journals (Sweden)

    Hebe Mattos

    2006-04-01

    Full Text Available Mixing between Europeans and Africans in the  Portuguese empire produced hierarchical categories for racial gradations during the seventeenth  century. During this period the categories ‘mulato’ and ‘pardo’ were included in the regulations  for Purity of Blood (Estatutos de Pureza de Sangue, which determined who could have access to  the same honours and privileges that the old  Christian Portuguese received. From the seventeenth century onwards, those regulations stipulated that ‘no one of the race of Jew, Moor or  Mulato’ (Raça alguma de Judeu, Mouro ou Mulato were eligible to receive certain honours and  privileges from the crown. This paper discusses  the meanings of ‘race’ on the basis of two historical case studies. The twin processes of miscegenation, in the biological sense, and cultural intermixing have engendered intermediate strata that have  long stimulated the imagination of historians.  Instead of emphasizing the idea of new strata of  mixed blood, the two cases presented here suggest  a more central role for the early demographic  impact of access to manumission in colonial society to explain the emergence of these intermediate  categories in Portuguese America.  Resumen: ‘Pretos’ y ‘Pardos’ Entre la Cruz y la Espada: Categorías Raciales en el Brasil del Siglo DiecisieteDurante el siglo diecisiete, las mezclas entre europeos y africanos en el imperio portugués produjeron categorías jerárquicas de gradaciones raciales. Durante este período las categorías de ‘mulato’ y ‘pardo’ fueron incluidas en los estatutos para  la Pureza de la Sangre (Estatutos de Pureza de  Sangue, que determinaban quiénes tenían acceso  a los mismos honores y privilegios de que gozaban los viejos cristianos portugueses. Desde el  siglo diecisiete en adelante, esos estatutos estipulaban que “nadie de la raza judía, moro o mulato”  (Raça alguma de Judeu, Mouro ou Mulato podí- an recibir ciertos

  1. “The dangerous classes”: Hugo Grotius and seventeenth-century piracy as a primitive anti-systemic movement

    Directory of Open Access Journals (Sweden)

    Eric Wilson

    2010-11-01

    Full Text Available This essay discusses the historical and textual representations of piracy in the writings of Hugo Grotius, primarily De Indis/De iure praedae(1603-1608 and the Commentarius in Theses XI (c. 1600. Contrary to popular belief, Grotius, in stark contrast to Jean Bodin, was not an advocate of the constitutionally homogenous Nation-State. Rather, his central concept of divisible sovereignty, the lynchpin of the constitutional theory of his early writings, unambiguously presents us with the object of the heterogeneousState. In Grotian theory, the State may be “read” as a composite construction, with a residual degree of inalienable sovereignty accruing at each unit-level. Even if only unconsciously, Grotius describes a concurrent para-political sub-division of the state between institutional Government (the “magistrates”and civil society, one that constitutes an operational system of governance within the Nation-State. Like his contemporary Johannes Althusius, Grotius’theory allows for the emergence of a wholly “private,” albeit lawful, mode of authority. This is most apparent in Grotius’ treatment of the mercantile trading Company and its Privateering operations. The corporatist theory of sovereignty permits the Company’s private agents of violence, the legally ambivalent Privateer/Pirate, to be invested with a requisite degree of sovereignty. The Grotian theory of divisible sovereignty, investing the seventeenth-century Pirate band with legal personality, serves as a vital historical precursor to the quasi-statist (trans- national criminal cartels of the twenty-first century. The Grotian Pirate/Privateer/Just Avenger, therefore, is a “nomad”: a liminal entity that simultaneously transverses both geographical and juro-political spaces, rendering him or herselfin-determinable.

  2. Definition, epidemiology and registries of pulmonary hypertension.

    Science.gov (United States)

    Awdish, R; Cajigas, H

    2016-05-01

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

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

    Science.gov (United States)

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

    2017-12-01

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

  4. [German resuscitation registry : science and resuscitation research].

    Science.gov (United States)

    Gräsner, J-T; Seewald, S; Bohn, A; Fischer, M; Messelken, M; Jantzen, T; Wnent, J

    2014-06-01

    Sudden death due to cardiac arrest represents one of the greatest challenges facing modern medicine, not only because of the massive number of cases involved but also because of its tremendous social and economic impact. For many years, the magic figure of 1 per 1000 inhabitants per year was generally accepted as an estimate of the annual incidence of sudden death in the industrialized world, with a survival rate of 6 %. This estimate was based on large numbers of published reports of local, regional, national and multinational experience in the management of cardiac arrest. Measuring the global incidence of cardiac arrest is challenging as many different definitions of patient populations are used. Randomized controlled trials (RCT) provide insights into the value of specific treatments or treatment strategies in a well-defined section of a population. Registries do not compete with clinical studies, but represent a useful supplement to them. Surveys and registries provide insights into the ways in which scientific findings and guidelines are being implemented in clinical practice. However, as with clinical studies, comprehensive preparations are needed in order to establish a registry. This is all the more decisive because not all of the questions that may arise are known at the time when the registry is established. The German resuscitation registry started in May 2007 and currently more than 230 paramedic services and hospitals take part. More than 45,000 cases of out-of-hospital cardiac arrest and in-hospital cardiac arrest are included. With this background the German resuscitation registry is one of the largest databases in emergency medicine in Germany. After 5 years of running the preclinical care dataset was revised in 2012. Data variables that reflect current or new treatment were added to the registry. The postresuscitation basic care and telephone cardiopulmonary resuscitation (CPR) datasets were developed in 2012 and 2013 as well. The German

  5. Neutron activation analysis of sixteenth- and seventeenth-century European blue glass trade beads from the eastern Great Lakes area of North America

    International Nuclear Information System (INIS)

    Hancock, R.G.V.; Chafe, A.; Kenyon, I.

    1994-01-01

    Sixteenth- and seventeenth-century European blue glass trade beads from aboriginal sites in the eastern Great Lakes area of North America have been analysed non-destructively using low neutron dose instrumental neutron activation analysis, so that the beads could be returned to their keepers. Dark blue (cobalt-coloured) beads are readily separable from turquoise (copper-coloured) beads. Differences in the chemistries of the turquoise blue beads appear to be useful in separating glass beads from the two centuries. Low calcium, sixteenth-century turquoise beads tend to disintegrate by a leaching of the alkali metals. (Author)

  6. The Danish Cerebral Palsy Registry. A registry on a specific impairment

    DEFF Research Database (Denmark)

    Uldall, P; Michelsen, Susan Ishøy; Topp, M

    2001-01-01

    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 ...

  7. The Danish Cerebral Palsy Registry. A registry on a specific impairment

    DEFF Research Database (Denmark)

    Uldall, P; Michelsen, Susan Ishøy; Topp, M

    2001-01-01

    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 CP...

  8. Comparison of cancer diagnoses between the US solid organ transplant registry and linked central cancer registries

    Science.gov (United States)

    Yanik, Elizabeth L.; Nogueira, Leticia M.; Koch, Lori; Copeland, Glenn; Lynch, Charles F.; Pawlish, Karen S.; Finch, Jack L.; Kahn, Amy R.; Hernandez, Brenda Y.; Segev, Dorry L.; Pfeiffer, Ruth M.; Snyder, Jon J.; Kasiske, Bertram L.; Engels, Eric A.

    2016-01-01

    US transplant centers are required to report cancers in transplant recipients to the transplant network. The accuracy and completeness of these data, collected in the Scientific Registry of Transplant Recipients (SRTR), are unknown. We compared diagnoses in the SRTR and 15 linked cancer registries, for colorectal, liver, lung, breast, prostate, and kidney cancers, melanoma, and non-Hodgkin lymphoma (NHL). Among 187,384 transplants, 9323 cancers were documented in the SRTR or cancer registries. Only 36.8% of cancers were in both, with 47.5% and 15.7% of cases additionally documented solely in cancer registries or the SRTR, respectively. Agreement between the SRTR and cancer registries varied (kappa: 0.28 for liver cancer, 0.52–0.66 for lung, prostate, kidney, colorectum and breast cancers). Upon evaluation, some NHLs documented only in cancer registries were identified in the SRTR as another type of post-transplant lymphoproliferative disorder. Some SRTR-only cases were explained by miscoding (colorectal cancer instead of anal cancer, metastases as lung or liver cancers) or missed matches with cancer registries, partly due to out-migration from their catchment areas. Estimated sensitivity for identifying cancer was 52.5% for the SRTR and 84.3% for cancer registries. In conclusion, SRTR cancer data are substantially incomplete, limiting their usefulness for surveillance and research. PMID:27062091

  9. The National Mental Health Registry (NMHR).

    Science.gov (United States)

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

    2008-09-01

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

  10. ISHKS joint registry: A preliminary report

    Directory of Open Access Journals (Sweden)

    Jawahir A Pachore

    2013-01-01

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

  11. The Danish National Acute Leukemia Registry

    DEFF Research Database (Denmark)

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

    2016-01-01

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

  12. United States Transuranium and Uranium Registries

    International Nuclear Information System (INIS)

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

    1991-06-01

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

  13. Systematic Review of Cerebral Palsy Registries/Surveillance Groups: Relationships between Registry Characteristics and Knowledge Dissemination

    Science.gov (United States)

    Hurley, Donna S; Sukal-Moulton, Theresa; Gaebler-Spira, Deborah; Krosschell, Kristin J; Pavone, Larissa; Mutlu, Akmer; Dewald, Julius PA; Msall, Michael E

    2016-01-01

    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

  14. Establishing an institutional therapeutic apheresis registry.

    Science.gov (United States)

    Mann, Steven A; McCleskey, Brandi; Marques, Marisa B; Adamski, Jill

    2016-12-01

    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.

  15. The Danish Neuro-Oncology Registry

    DEFF Research Database (Denmark)

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

    2016-01-01

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

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

    Science.gov (United States)

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

    2017-08-01

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

  17. Mexican registry of pulmonary hypertension: REMEHIP.

    Science.gov (United States)

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

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

  18. Costing Tool for International Cancer Registries

    Centers for Disease Control (CDC) Podcasts

    2016-11-21

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

  19. An international registry for primary ciliary dyskinesia

    DEFF Research Database (Denmark)

    Werner, Claudius; Lablans, Martin; Ataian, Maximilian

    2016-01-01

    Primary ciliary dyskinesia (PCD) is a rare autosomal recessive disorder leading to chronic upper and lower airway disease. Fundamental data on epidemiology, clinical presentation, course and treatment strategies are lacking in PCD. We have established an international PCD registry to realise an u...

  20. An active registry for bioinformatics web services.

    NARCIS (Netherlands)

    Pettifer, S.; Thorne, D.; McDermott, P.; Attwood, T.; Baran, J.; Bryne, J.C.; Hupponen, T.; Mowbray, D.; Vriend, G.

    2009-01-01

    SUMMARY: The EMBRACE Registry is a web portal that collects and monitors web services according to test scripts provided by the their administrators. Users are able to search for, rank and annotate services, enabling them to select the most appropriate working service for inclusion in their

  1. Correlating Orphaned Windows Registry Data Structures

    Directory of Open Access Journals (Sweden)

    Damir Kahved

    2009-06-01

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

  2. Danish Registry of Childhood and Adolescent Diabetes

    DEFF Research Database (Denmark)

    Svensson, Jannet; Cerqueira, Charlotte; Kjærsgaard, Per

    2016-01-01

    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...

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

    DEFF Research Database (Denmark)

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

    2012-01-01

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

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

    DEFF Research Database (Denmark)

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

    2001-01-01

    The Danish Multiple Sclerosis Registry was formally established in 1956 but started operating in 1949 with a nationwide prevalence survey. Since then, the Registry has continued collecting data on new and old cases of multiple sclerosis (MS) or suspected MS from multiple sources. The Registry...

  5. Strategies to achieve sustainability and quality in birth defects registries: the experience of the National Registry of Congenital Anomalies of Argentina.

    Science.gov (United States)

    Groisman, Boris; Bidondo, Maria Paz; Gili, Juan Antonio; Barbero, Pablo; Liascovich, Rosa

    2013-01-01

    In many low-and middle-income countries, birth defects are not considered a public health priority and are perceived by the medical community as rare, unpreventable events. In this context, a registry of birth defects should address not only the collection, analysis, and dissemination of information but also contribute to local interventions like prevention, diagnosis, and treatment. We describe the National Registry of Congenital Anomalies of Argentina (RENAC) in terms of case definition, data collection, quality assurance, and data sending, coding, analysis, and information dissemination and we present the strategies used to ensure its sustainability. We emphasize strategies for motivating the people collecting data, such as training activities, participation in research projects, returning the processed data, making useful clinical information available, giving non-monetary rewards, and linking cases to genetic services.

  6. Clinical trial registries: a practical guide for sponsors and researchers of medicinal products

    National Research Council Canada - National Science Library

    Foote, MaryAnn

    2006-01-01

    ... Industry perspective on public clinical trial registries and results databases . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...

  7. In Search of an Audience: Popular Pharmacies and the Limits of Literate Medicine in Late Seventeenth- and Early Eighteenth-Century Russia.

    Science.gov (United States)

    Griffin, Clare

    2015-01-01

    This article addresses the question of the limits of literate medicine in Europe, through an examination of the Russian literate medical world of the late seventeenth and early eighteenth centuries. Russian courtly medicine had been dominated by Western Europeans from the 1480s, but in the early eighteenth century new licensing arrangements solidified the presence of these foreigners in the wider Russian medical world. Foreign medical practitioners took advantage of this development, aiming works at an increasingly large proportion of Russian literate society. These works, along with satirical and religious works emulating or deriding medical texts, show how by the 1720s the limits of literate medicine in Russia lay not at the edges of official court medicine, but rather at the edges of literate society.

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

    NARCIS (Netherlands)

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

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

  9. A Squandered Opportunity?: A Review of SAMHSA's National Registry of Evidence-Based Programs and Practices for Offenders

    Science.gov (United States)

    Wright, Benjamin J.; Zhang, Sheldon X.; Farabee, David

    2012-01-01

    In the past decade, the push for evidence-based programs has taken on unprecedented prominence in the fields of substance abuse and correctional treatment as a key determinant for intervention funding. The National Registry of Evidence-based Programs and Practices (NREPP), managed and funded by the Substance Abuse and Mental Health Services…

  10. Common variables in European pancreatic cancer registries

    DEFF Research Database (Denmark)

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

    2016-01-01

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

  11. The national dose registry of Canada

    International Nuclear Information System (INIS)

    1982-04-01

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

  12. Forensic Analysis of the Windows 7 Registry

    Directory of Open Access Journals (Sweden)

    Khawla Abdulla Alghafli

    2010-12-01

    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.

  13. Registry of Mineral and Petroleum Titles

    Energy Technology Data Exchange (ETDEWEB)

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

    2000-07-01

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

  14. An international registry for primary ciliary dyskinesia.

    Science.gov (United States)

    Werner, Claudius; Lablans, Martin; Ataian, Maximilian; Raidt, Johanna; Wallmeier, Julia; Große-Onnebrink, Jörg; Kuehni, Claudia E; Haarman, Eric G; Leigh, Margaret W; Quittner, Alexandra L; Lucas, Jane S; Hogg, Claire; Witt, Michal; Priftis, Kostas N; Yiallouros, Panayiotis; Nielsen, Kim G; Santamaria, Francesca; Ückert, Frank; Omran, Heymut

    2016-03-01

    Primary ciliary dyskinesia (PCD) is a rare autosomal recessive disorder leading to chronic upper and lower airway disease. Fundamental data on epidemiology, clinical presentation, course and treatment strategies are lacking in PCD. We have established an international PCD registry to realise an unmet need for an international platform to systematically collect data on incidence, clinical presentation, treatment and disease course.The registry was launched in January 2014. We used internet technology to ensure easy online access using a web browser under www.pcdregistry.eu. Data from 201 patients have been collected so far. The database is comprised of a basic data form including demographic and diagnostic information, and visit forms designed to monitor the disease course.To establish a definite PCD diagnosis, we used strict diagnostic criteria, which required two to three diagnostic methods in addition to classical clinical symptoms. Preliminary analysis of lung function data demonstrated a mean annual decline of percentage predicted forced expiratory volume in 1 s of 0.59% (95% CI 0.98-0.22).Here, we present the development of an international PCD registry as a new promising tool to advance the understanding of this rare disorder, to recruit candidates for research studies and ultimately to improve PCD care. Copyright ©ERS 2016.

  15. Impact of clinical registries on quality of patient care and clinical outcomes: A systematic review.

    Directory of Open Access Journals (Sweden)

    Dewan Md Emdadul Hoque

    Full Text Available Clinical quality registries (CQRs are playing an increasingly important role in improving health outcomes and reducing health care costs. CQRs are established with the purpose of monitoring quality of care, providing feedback, benchmarking performance, describing pattern of treatment, reducing variation and as a tool for conducting research.To synthesise the impact of clinical quality registries (CQRs as an 'intervention' on (I mortality/survival; (II measures of outcome that reflect a process or outcome of health care; (III health care utilisation; and (IV healthcare-related costs.The following electronic databases were searched: MEDLINE, EMBASE, CENTRAL, CINAHL and Google Scholar. In addition, a review of the grey literature and a reference check of citations and reference lists within articles was undertaken to identify relevant studies in English covering the period January 1980 to December 2016. The PRISMA-P methodology, checklist and standard search strategy using pre-defined inclusion and exclusion criteria and structured data extraction tools were used. Data on study design and methods, participant characteristics attributes of included registries and impact of the registry on outcome measures and/or processes of care were extracted.We identified 30102 abstracts from which 75 full text articles were assessed and finally 17 articles were selected for synthesis. Out of 17 studies, six focused on diabetes care, two on cardiac diseases, two on lung diseases and others on organ transplantations, rheumatoid arthritis, ulcer healing, surgical complications and kidney disease. The majority of studies were "before after" design (#11 followed by cohort design (#2, randomised controlled trial (#2, experimental non randomised study and one cross sectional comparison. The measures of impact of registries were multifarious and included change in processes of care, quality of care, treatment outcomes, adherence to guidelines and survival. Sixteen of 17

  16. The FOP Connection Registry: Design of an international patient-sponsored registry for Fibrodysplasia Ossificans Progressiva.

    Science.gov (United States)

    Mantick, Neal; Bachman, Eric; Baujat, Genevieve; Brown, Matt; Collins, Oliver; De Cunto, Carmen; Delai, Patricia; Eekhoff, Marelise; Zum Felde, Roger; Grogan, Donna Roy; Haga, Nobuhiko; Hsiao, Edward; Kantanie, Sharon; Kaplan, Frederick; Keen, Richard; Milosevic, Jelena; Morhart, Rolf; Pignolo, Robert; Qian, Xiaobing; di Rocco, Maja; Scott, Christiaan; Sherman, Adam; Wallace, Marin; Williams, Nicky; Zhang, Keqin; Bogard, Betsy

    2018-04-01

    The Fibrodysplasia Ossificans Progressiva (FOP) Connection Registry is an international, voluntary, observational study that directly captures demographic and disease information initially from patients with FOP (the patient portal) and in the near future from treating physicians (the physician portal) via a secure web-based tool. It was launched by the International FOP Association (IFOPA) with a guiding vision to develop and manage one unified, global, and coordinated Registry allowing the assembly of the most comprehensive data on FOP. This will ultimately facilitate greater access and sharing of patient data and enable better and faster development of therapies and tracking their long-term treatment effectiveness and safety. This report outlines the FOP Connection Registry's design and procedures for data collection and reporting, as well as the long-term sustainability of Registry. Patient-reported, aggregate data are summarized for the first 196 enrolled patients, representing participation from 42 countries and approximately 25% of the world's known FOP population. Fifty-seven percent of the current Registry participants are female with a mean age of 23.8years (median=21years, range=1, 76years). Among the Registry participants who provided their FOP type, 51% reported FOP Classic (R206H), 41% reported FOP Type Unknown, and 8% reported FOP Variant. Patients reported 5.4years (median=3.0years, range=0, 45.8years) as the mean age at which they noticed their first FOP symptoms and a mean age at final FOP diagnosis of 7.5years (median=5.0years, range=0.1, 48.4years). Information on the patients' diagnostic journeys in arriving at a correct diagnosis of FOP is also presented. These early patient-reported data suggest that the IFOPA's vision of one, unified, global, and coordinated approach to the FOP Connection Registry is well underway to being realized. In addition, the positive response from the FOP patient community to the initial launch of the Registry

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

    Directory of Open Access Journals (Sweden)

    Tsong-Hai Lee

    2011-08-01

    Full Text Available To establish a prospective, real-time, self-sustainable stroke registry system, we incorporated a registry with an electronic chart to create an electronic chart-based stroke registry system in November 2006. The International Classification of Diseases Ninth Revision code (430–437 was used to auto-enroll stroke patients admitted to neurology departments. Clinical information was written by doctors, nursing information was recorded by nurses, and basic patient information was entered by administrative departments. Numerical data and the date and time of any studies were auto-downloaded from the hospital computer. In total, 212 items were auto-downloaded, including basic patient information, laboratory blood test and examination results, and the date and time of imaging and special intervention. The stroke scales (121 items, National Institutes of Health Stroke Scale, Barthel index, and modified Rankin scale were designed to be auto-adjusted to reduce incompatibility. The 95 items with pull-down options were used to specify the contents. This registry system can be time-, labor- and money-saving with secured data accuracy.

  18. LombardIMA: a regional registry for coronary angioplasty in ST-elevation myocardial infarction.

    Science.gov (United States)

    Politi, Alessandro; Martinoni, Alessandro; Klugmann, Silvio; Zanini, Roberto; Onofri, Marco; Guagliumi, Giulio; Fiorentini, Cesare; Lettieri, Corrado; Belli, Guido; Piccaluga, Emanuela; De Cesare, Nicoletta; D'Urbano, Maurizio; Ettori, Federica; Repetto, Alessandra; Musumeci, Giuseppe; Castiglioni, Battistina; Colombo, Paola; Passamonti, Enrico; Bramucci, Ezio; Cattaneo, Laura; Ferrari, Giovanni; Repetto, Sergio; Bartorelli, Antonio; Pirelli, Salvatore; De Servi, Stefano

    2011-01-01

    Percutaneous coronary intervention (PCI) has been shown to be the best reperfusion therapy for acute myocardial infarction with ST-elevation (STEMI), but data from registries show differences in patient populations and outcomes between randomized trials and real life. We sought to provide information about the current status of this treatment with a registry collecting data in Lombardy, the most densely populated region in Italy, with widespread availability of cathlabs and a well-established network for the treatment of STEMI. Patient enrollment was performed by 32 hub centres recruiting 3901 STEMI patients who underwent PCI procedures within 12 h of the onset of symptoms, of whom 3317 patients underwent primary PCI, 376 'facilitated' PCI, and 208 rescue PCI in cathlabs located, in 77% of cases, in the same hospital of admission. In-hospital and 30-day total death were 4.4 and 6.6%, respectively. At multivariate analysis independent negative predictors of 30-day mortality were Killip class 3-4, number of involved ECG leads, chronic renal failure and age, whereas positive predictors were ST resolution more than 50% and postprocedural grade 3 thrombolysis in myocardial infarction flow. LombardIMA PCI registry enrolled STEMI patients representing a real-world population treated with PCI. Findings presented in this study may provide a benchmark for similar registries undertaken in other Italian regions and may be helpful to assess future possible developments of care for STEMI patients.

  19. A Registry Framework Enabling Patient-Centred Care.

    Science.gov (United States)

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

    2015-01-01

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

  20. Intervention in churches damaged by earthquake in colonial guatemalan villages of Indians

    Directory of Open Access Journals (Sweden)

    Mario Alfredo Ubico Calderón

    2016-07-01

    Full Text Available This paper highlights some proposals that at that time the builders of the province of Guatemala formulated to extend the life of the temples of Indians villages damaged by earthquake in the seventeenth and eighteenth centuries. The question raised of how they were operated temples damaged by earthquake in Cologne?, was answered using the historical method applied to architecture, it allowed through the study of ancient documents information that would explain the ways proposed to recover these spaces. Interventions essentially revolve around two major decisions, demolition and subsequent reconstruction or reinforcement, and sometimes both, so that the buildings could be used again.

  1. National registry of hemoglobinopathies in Spain (REPHem).

    Science.gov (United States)

    Cela, Elena; Bellón, José M; de la Cruz, María; Beléndez, Cristina; Berrueco, Rubén; Ruiz, Anna; Elorza, Izaskun; Díaz de Heredia, Cristina; Cervera, Aurea; Vallés, Griselda; Salinas, J Antonio; Coll, M Teresa; Bermúdez, Mar; Prudencio, Marta; Argilés, Bienvenida; Vecilla, Cruz

    2017-07-01

    Although highly prevalent throughout the world, the accurate prevalence of hemoglobinopathies in Spain is unknown. This study presents data on the national registry of hemoglobinopathies of patients with thalassemia major (TM), thalassemia intermedia (TI), and sickle cell disease (SCD) in Spain created in 2014. Fifty centers reported cases retrospectively. Data were registered from neonatal screening or from the first contact at diagnosis until last follow-up or death. Data of the 715 eligible patients were collected: 615 SCD (497 SS, 64 SC, 54 SBeta phenotypes), 73 thalassemia, 9 CC phenotype, and 18 other variants. Most of the SCD patients were born in Spain (65%), and 51% of these were diagnosed at newborn screening. Median age at the first diagnosis was 0.4 years for thalassemia and 1.0 years for SCD. The estimated incidence was 0.002 thalassemia cases and 0.03 SCD cases/1,000 live births. Median age was 8.9 years (0.2-33.7) for thalassemia and 8.1 years (0.2-32.8) for SCD patients. Stroke was registered in 16 SCD cases. Transplantation was performed in 43 TM and 23 SCD patients at a median age of 5.2 and 7.8 years, respectively. Twenty-one patients died (3 TM, 17 SCD, 1 CC) and 200 were lost to follow-up. Causes of death were related to transplantation in three patients with TM and three patients with SCD. Death did not seem to be associated with SCD in six patients, but nine patients died secondary to disease complications. Overall survival was 95% at 15 years of age. The registry provides data about the prevalence of hemoglobinopathies in Spain and will permit future cohort studies and the possibility of comparison with other registries. © 2016 Wiley Periodicals, Inc.

  2. The Danish Neuro-Oncology Registry

    DEFF Research Database (Denmark)

    Hansen, Steinbjørn

    2016-01-01

    AIM OF DATABASE: The Danish Neuro-Oncology Registry (DNOR) was established by the Danish Neuro-Oncology Group as a national clinical database. It was established for the purpose of supporting research and development in adult patients with primary brain tumors in Denmark. STUDY POPULATION: DNOR has...... advantage of reporting indicators is the related multidisciplinary discussions giving a better understanding of what actually is going on, thereby facilitating the work on adjusting the national guidelines in the Danish Neuro-Oncology Group. CONCLUSION: The establishment of DNOR has optimized the quality...

  3. Danish Registry of Childhood and Adolescent Diabetes

    Directory of Open Access Journals (Sweden)

    Svensson J

    2016-10-01

    Full Text Available Jannet Svensson,1 Charlotte Cerqueira,2 Per Kjærsgaard,3 Lene Lyngsøe,4 Niels Thomas Hertel,5 Mette Madsen,6 Henrik B Mortensen,1 Jesper Johannesen1 1Pediatric and Adolescent Department, Copenhagen University Hospital, Herlev and Gentofte, Herlev, 2Registry Support Centre (East – Epidemiology and Biostatistics, Research Centre for Prevention and Health, Capital Region of Denmark, Glostrup, 3Pediatric Department, County Hospital Herning, Herning, 4Pediatric and Adolescent Department, Nordsjællands Hospital, Hillerød, 5HC Andersen Childrens Hospital, Odense University Hospital, Odense, 6Pediatric Department, Aalborg University Hospital, Aalborg, Denmark Aim: The aims of the Danish Registry of Childhood and Adolescent Diabetes (DanDiabKids are to monitor and improve the quality of care for children and adolescents with diabetes in Denmark and to follow the incidence and prevalence of diabetes. Study population: The study population consists of all children diagnosed with diabetes before the age of 15 years since 1996. Since 2015, every child followed up at a pediatric center (<18 years of age will be included. Main variables: The variables in the registry are the quality indicators, demographic variables, associated conditions, diabetes classification, family history of diabetes, growth parameters, self-care, and treatment variables. The quality indicators are selected based on international consensus of measures of good clinical practice. The indicators are metabolic control as assessed by HbA1c, blood pressure, albuminuria, retinopathy, neuropathy, number of severe hypoglycemic events, and hospitalization with ketoacidosis. Descriptive data: The number of children diagnosed with diabetes is increasing with ~3% per year mainly for type 1 diabetes (ie, 296 new patients <15 years of age were diagnosed in 2014. The disease management has changed dramatically with more children treated intensively with multiple daily injections, insulin pumps

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

    DEFF Research Database (Denmark)

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

    2001-01-01

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

  5. The Canadian Biliary Atresia Registry: Improving the care of Canadian infants with biliary atresia.

    Science.gov (United States)

    Butler, Alison E; Schreiber, Richard A; Yanchar, Natalie; Emil, Sherif; Laberge, Jean-Martin

    2016-04-01

    Biliary atresia is the most common cause of end-stage liver disease and liver cirrhosis in children, and the leading indication for liver transplantation in the paediatric population. There is no cure for biliary atresia; however, timely diagnosis and early infant age at surgical intervention using the Kasai portoenterostomy optimize the prognosis. Late referral is a significant problem in Canada and elsewhere. There is also a lack of standardized care practices among treating centres in this country. Biliary atresia registries currently exist across Europe, Asia and the United States. They have provided important evidence-based information to initiate changes to biliary atresia care in their countries with improvements in outcome. The Canadian Biliary Atresia Registry was initiated in 2013 for the purpose of identifying best standards of care, enhancing public education, facilitating knowledge translation and advocating for novel national public health policy programs to improve the outcomes of Canadian infants with biliary atresia.

  6. Environmente Rural Registry: Originality, Innovation or Mere Bureaucracy

    Directory of Open Access Journals (Sweden)

    Cristiano Pacheco de Deus Mundim

    2016-10-01

    Full Text Available A new registry of rural properties was implemented in Brazil, it comes assist environmental managers in control and combat forest deforestation. This new instrument will be used in the protection of the environment, and those responsible for building this new registry will be the owners and rural possessors. They complied with the constitutional duty to preserve the environment for present and future generations, at the time they provide their statements to newly created Environment Rural Registry.

  7. Spanish, Portuguese, and Neo-Latin Poetry Written and/or Published by Seventeenth-, Eighteenth-, and Nineteenth-Century Sephardim from Hamburg and Frankfurt (2

    Directory of Open Access Journals (Sweden)

    Brown, Kenneth

    2001-06-01

    Full Text Available The present study is the second in a three-part series (the first appearing in Sefarad 59 [1999] pp. 3-42; the third being in press on the phenomenon of Neo- Latin and Romance-Language —Spanish and Portuguese— poetry of the Sephardim in Hamburg and Frankfurt am Main from the early seventeenth to the midnineteenth centuries. Our collection expands the original poetic corpus from twenty-eight to forty-five works. In an historical and critical Introduction to the poems, the authors distinguish the creative genius of a new type of literary discourse, one which meshes neo-classical strophic forms with inspiration from Sephardic orthodox Judaism as it was practiced in the Dutch Netherlands, biblical events and Jewish philosophical constructs. In addition to the evaluation and edition of the poems and, in the cases of Neo-Latin works, their translation to English, the Introduction includes an argument for substantiating book printing of Sephardic-authored books in Frankfurt am Main during the period 1614-1634 as well as sporadically throughout the remainder of the seventeenth century.

    Nuestro estudio representa la segunda parte (la primera apareció en Sefarad 59 [1999] págs. 3-42; la tercera está en prensa de un trabajo sobre la poesía en latín y lenguas romances —español y portugués— de los sefardíes de Hamburgo y de Frankfurt am Main desde principios del siglo XVII hasta mediados del XVIII. Aquí el corpus poetarum se amplía de veintiocho a cuarenta y cinco obras; estas nuevas poesías evidencian un espíritu neoclasicista mezclado ingeniosamente con un discurso apegado a un judaísmo ortodoxo-sefardí tal como entonces se practicaba en los países protestantes del norte de Europa. En el apartado introductorio, que es tanto descriptivo como evaluativo de la obra poética, se defiende la tesis de que la ciudad protestante de Frankfurt am Main con su feria del libro anual servía como lugar de impresi

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

    Science.gov (United States)

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

    2018-02-01

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

  9. Is There Anything to Learn from a National Joint Registry?

    Science.gov (United States)

    Muir, Dawson

    2017-06-01

    National joint registries (NJRs) have been established in Northern Europe for over 20 years. Since then, many other countries have begun collecting and reporting national data for total ankle arthroplasty (TAA). With relatively small numbers implanted, a large variety of available designs, and with any long-term reports dominated by designer groups, TAA is ideally placed to benefit from large national or even pooled national registries. This article reviews the existing registry-based literature with respect to what is already known. The potential positives and down sides of registry data also are highlighted. Copyright © 2017 Elsevier Inc. All rights reserved.

  10. The Danish Knee Ligament Reconstruction Registry

    Directory of Open Access Journals (Sweden)

    Rahr-Wagner L

    2016-10-01

    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

  11. The Three Mile Island Population Registry.

    Science.gov (United States)

    Goldhaber, M K; Tokuhata, G K; Digon, E; Caldwell, G G; Stein, G F; Lutz, G; Gur, D

    1983-01-01

    Shortly after the March 28, 1979, accident at the Three Mile Island (TMI) nuclear plant outside Harrisburg, Pa., the Pennsylvania Department of Health, in conjunction with the Centers for Disease Control and the U.S. Bureau of the Census, conducted a census of the 35,930 persons residing within 5 miles of the plant. With the help of 150 enumerators, demographic and health-related information was collected on each person to provide baseline data for future short- and long-term epidemiologic studies of the effects of the accident. Individual radiation doses were estimated on the basis of residential location and the amount of time each person spent in the 5-mile area during the 10 days after the accident. Health and behavioral resurveys of the population will be conducted approximately every 5 years. Population-mobility, morbidity, and mortality will be studied yearly by matching the TMI Population Registry with postal records, cancer registry records, and death certificate data. Because the radiation dose from TMI was extremely small, any increase in morbidity or mortality attributable to the accident would be so small as not to be measurable by present methods; however, adverse health effects as a result of psychological stress may occur. Also, a temporary increase in reporting of disease could occur because of increased surveillance and attention to health.

  12. Thyroid Cancer and Tumor Collaborative Registry (TCCR).

    Science.gov (United States)

    Shats, Oleg; Goldner, Whitney; Feng, Jianmin; Sherman, Alexander; Smith, Russell B; Sherman, Simon

    2016-01-01

    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.

  13. The national registry for radiation workers

    International Nuclear Information System (INIS)

    Kendall, G.M.; Dennis, J.A.

    1985-01-01

    The National Registry for Radiation Workers (NRRW) was set up by the National Radiological Protection Board in 1976. The analysis of registry data has four aims: a) To determine whether there is any evidence of differences in the causes of and ages at death of workers exposed to different levels of radiation and, if any differences are found, whether it seems likely that they can be attributed to radiation. b) To estimate the magnitude of the risk, if any differences are found, that seem likely to be attributable to radiation. c) To estimate bounds to the possible risk for particular types of malignancy, such as leukemia. d) To compare the mortality experience of radiation workers with national mortality data and also with that of other industrial groups for whom data exist. If current estimates of the risks of ionizing radiation are correct, very few deaths will be induced in the study population and it will be impossible to detect them statistically. The NRRW currently includes records for over 60,000 individuals. 6 refs

  14. «In the Shadow» of Absent Men: Unhappily Married Women in the Hispanic World of the Seventeenth Century

    Directory of Open Access Journals (Sweden)

    María José DE LA PASCUA SÁNCHEZ

    2016-12-01

    Full Text Available The households with feminine heads have been revealed in recent research as an important social reality in Early Modern Europe. These households, often under direction of a widow, and to a lesser extent, of a spinster or an unhappily married woman, are providing historians with the possibility to observe women’s lives from the margins of structures of patriarchal power. The economic, social and affective reality of unhappily married women needs a profound analysis, that goes beyond a quantitative magnitude, facing the challenge of imagining these women in conditions that, at first glance, didn’t go beyond exceptional and accidental, but in reality they could have formed an environment of autonomy and power for themselves. In this study, judicial records and testaments which come from Cadiz in the Sixteenth and Seventeenth Centuries are utilised to show the different paths of the lifes of women with absent husbands. These testimonials confirm that the experiences of women and their own perception of themselves differ not only as a function of their own circumstances but also according to the sources that we could choose. If from the allegations of abandonment from the «Warrants to Indies» it can be deduced that for this collective, overall they experienced poverty and difficult conditions, their wills offer a visión of full lives where work and affection are basic structures.

  15. Three Giants in the Cradle of Reproductive Medicine; Reproduction Theories of the Seventeenth Century as Discerned by Pregnancy Portraiture in the Oeuvre of Jan Vermeer

    Directory of Open Access Journals (Sweden)

    Ronit Haimov-Kochman

    2016-04-01

    Full Text Available Portraits of pregnant women are rare in Catholic Renaissance art. In seventeenth-century Holland, the Catholic rule of Spain had been thrown off and a Protestant Calvinistic republic emerged, freeing Dutch artists to choose an unorthodox subject matter for their paintings. The Golden Age of Holland was characterized by extreme wealth, originating from overseas trade, which fostered a marked interest in philosophy, science, medicine, as well as art. Despite this, portraiture of pregnancy remained uncommon. An exception to this rule was Jan Vermeer of Delft, who lived during the zenith of this era. Jan Vermeer painted fewer than 40 pictures, fathered 15 children, and died bankrupt and little appreciated at the age of 43. Vermeer confined himself almost entirely to images of women in various domestic situations, including three figures of pregnant women. In this framework, pregnancy could be viewed as an icon for fidelity and conformism to social expectations. In this paper we investigate the roots of this unusual icon in Vermeer’s oeuvre, and suggest that the use of pregnancy in his paintings could have been inspired by his Delft-resident contemporaries Antony van Leeuwenhoek and Reinier de Graaf, fathers of well-known and opposing theories of reproduction. These eminent scientists and Vermeer’s pregnant wife, who frequently served as his model, might have made pregnancy less mysterious and more realistic to the painter.

  16. The Danish National Multiple Myeloma Registry

    Directory of Open Access Journals (Sweden)

    Gimsing P

    2016-10-01

    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

  17. The GEOSS Component and Service Registry

    Science.gov (United States)

    Di, L.; Bai, Y.; Shen, D.; Shao, Y.; Shrestha, R.; Wang, H.; Nebert, D. D.

    2011-12-01

    Petabytes of Earth science data have been accumulated through space- and air-borne Earth observation programs during the last several decades. The data are valuable both scientifically and socioeconomically. The value of these data could be further increased significantly if the data from these programs can be easily discovered, accessed, integrated, and analyzed. The Global Earth Observation System of Systems (GEOSS) is addressing this need. Coordinated by the Group on Earth Observations (or GEO), a voluntary partnership of 86 governments, the European Commission, and 61 intergovernmental, international, and regional organizations has been working on implementing GEOSS for a number of years. After four years of international collaboration, the GEOSS Common Infrastructure (GCI) has been established. GCI consists of the Standards and Interoperability Registry (SIR), the Component and Service Registry (CSR), the GEO clearinghouse, and the GEO Portal. The SIR maintains the list of the public standards recognized by the GEO. CSR provides a centralized registry for available Earth Observation resources. The GEO clearinghouse works as a single search facility for GEOSS-wide resources and the GEO Portal provides an integrated Web-based interfaces for users. Since January 2007, researchers at CSISS, GMU have collaborated with officials from the Federal Geographic Data Committee (FGDC) on designing, implementing, maintaining, and upgrading CSR. Currently CSR provides the following capabilities for data providers: user registration, resource registration, and service interface registration. The CSR clients can discover the resources registered in CSR through OGC Catalog for Web (CSW), UUDI, and other standard interfaces. During the resource registration process, providers may define detailed descriptive information for their resources, in particular, the targeted societal benefit area and sub-areas of focus, and the targeted critical Earth Observations. The service

  18. Design of a prospective, multinational registry to evaluate patients hospitalized with hyponatremia: the HN Registry

    Directory of Open Access Journals (Sweden)

    Hauptman PJ

    2013-08-01

    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

  19. Quality of trauma care and trauma registries.

    Science.gov (United States)

    Pino Sánchez, F I; Ballesteros Sanz, M A; Cordero Lorenzana, L; Guerrero López, F

    2015-03-01

    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.

  20. The Danish Registry of Diabetic Retinopathy

    DEFF Research Database (Denmark)

    Andersen, Nis; Hjortdal, Jesper Østergaard; Schielke, Katja Christina

    2016-01-01

    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...

  1. The Danish National Multiple Myeloma Registry

    DEFF Research Database (Denmark)

    Gimsing, Peter; Holmström, Morten Orebo; Klausen, Tobias Wirenfelt

    2016-01-01

    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......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......), monoclonal gammopathy of undetermined significance and monoclonal gammopathy of undetermined significance with polyneuropathy have been registered since 2014. MAIN VARIABLES: The main registered variables at diagnosis are patient demographics, baseline disease characteristics, myeloma-defining events...

  2. The Danish registry of diabetic retinopathy

    DEFF Research Database (Denmark)

    Andersen, Mads Varis Nis; Hjortdal, Jesper Østergaard; Schielke, Katja Christina

    2016-01-01

    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...

  3. The Danish National Chronic Myeloid Neoplasia Registry

    DEFF Research Database (Denmark)

    Bak, Marie; Ibfelt, Else Helene; Stauffer Larsen, Thomas

    2016-01-01

    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......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...... 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 DATA: By the end of 2014, the DCMR contained data...

  4. Review of military and civilian trauma registries : Does consensus matter?

    NARCIS (Netherlands)

    van Dongen, Thijs T C F; de Graaf, Johan; Huizinga, Eelco P; Champion, Howard R; Hoencamp, Rigo; Leenen, Luke P H

    2017-01-01

    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

  5. Preliminary Data from a De Novo Trauma Registry

    African Journals Online (AJOL)

    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 shares preliminary data from the Kenyatta ...

  6. 42 CFR 483.156 - Registry of nurse aides.

    Science.gov (United States)

    2010-10-01

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

  7. The making of a pan-European organ transplant registry

    NARCIS (Netherlands)

    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

  8. 37 CFR 201.25 - Visual Arts Registry.

    Science.gov (United States)

    2010-07-01

    ... 37 Patents, Trademarks, and Copyrights 1 2010-07-01 2010-07-01 false Visual Arts Registry. 201.25 Section 201.25 Patents, Trademarks, and Copyrights COPYRIGHT OFFICE, LIBRARY OF CONGRESS COPYRIGHT OFFICE AND PROCEDURES GENERAL PROVISIONS § 201.25 Visual Arts Registry. (a) General. This section prescribes the procedures relating to the submission...

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

    African Journals Online (AJOL)

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

  10. I RBH - First Brazilian Hypertension Registry

    Directory of Open Access Journals (Sweden)

    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

  11. How Suitable Are Registry Data for Recurrence Risk Calculations?

    DEFF Research Database (Denmark)

    Ellesøe, Sabrina Gade; Jensen, Anders Boeck; Ängquist, Lars Henrik

    2016-01-01

    if registry data are used indiscriminately. Here, we investigated the consequences of misclassifications for the RRR using validated diagnoses on Danish patients with familial CHD. METHODS: Danish citizens are assigned a civil registration number (CPR number) at birth or immigration, which acts as a unique...... identifier in the Danish registries, thus enabling connection of information from several registries. Utilizing the CPR number, we identified Danish patients with familial CHD and reviewed each patient's file. We compared diagnoses from the registries with those manually assigned, which enabled calculation......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...

  12. Patient-reported outcome measures in arthroplasty registries

    DEFF Research Database (Denmark)

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

    2016-01-01

    . The establishment of a PROM instrument requires the fulfillment of methodological standards and rigorous testing to ensure that it is valid, reliable, responsive, and acceptable to the intended population. A survey of the 41 ISAR member registries showed that 8 registries administered a PROMs program that covered......The International Society of Arthroplasty Registries (ISAR) Steering Committee established the Patient-Reported Outcome Measures (PROMs) Working Group to convene, evaluate, and advise on best practices in the selection, administration, and interpretation of PROMs and to support the adoption and use...... all elective hip or knee arthroplasty patients and 6 registries collected PROMs for sample populations; 1 other registry had planned but had not started collection of PROMs. The most common generic instruments used were the EuroQol 5 dimension health outcome survey (EQ-5D) and the Short Form 12 health...

  13. Informed consent and registry-based research - the case of the Danish circumcision registry.

    Science.gov (United States)

    Ploug, Thomas; Holm, Søren

    2017-09-15

    Research into personal health data holds great potential not only for improved treatment but also for economic growth. In these years many countries are developing policies aimed at facilitating such research often under the banner of 'big data'. A central point of debate is whether the secondary use of health data requires informed consent if the data is anonymised. In 2013 the Danish Minister of Health established a new register collecting data about all ritual male childhood circumcisions in Denmark. The main purpose of the register was to enable future research into the consequences of ritual circumcision. This article is a study into the case of the Danish Circumcision Registry. We show that such a registry may lead to various forms of harm such as 1) overreaching social pressure, 2) stigmatization, 3) medicalization of a religious practice, 4) discrimination, and 5) polarised research, and that a person may therefore have a strong and legitimate interest in deciding whether or not such data should be collected and/or used in research. This casts doubt on the claim that the requirement of informed consent could and should be waived for all types of secondary research into registries. We finally sketch a new model of informed consent - Meta consent - aimed at striking a balance between the interests in promoting research and at the same time protecting the individual. Research participants may have a strong and legitimate interest in deciding whether or not their data should be collected and used for registry-based research whether or not their data is anonymised.

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

    Directory of Open Access Journals (Sweden)

    Luiz Sérgio Marcelino Gomes

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

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

    Science.gov (United States)

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

    2017-01-01

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

  16. Regorafenib in the Real-Life Clinical Practice: Data from the Czech Registry.

    Science.gov (United States)

    Kopeckova, Katerina; Buchler, Tomas; Bortlicek, Zbynek; Hejduk, Karel; Chloupkova, Renata; Melichar, Bohuslav; Pokorna, Petra; Tomasek, Jiri; Linke, Zdenek; Petruzelka, Lubos; Kiss, Igor; Prausova, Jana

    2017-02-01

    To describe the use of regorafenib for the treatment of metastatic colorectal cancer (mCRC) in clinical practice in the Czech Republic, and to describe the clinical outcomes of patients in terms of safety and survival. The data of patients treated with regorafenib were extracted from the national CORECT registry. The CORECT registry is a non-interventional post-marketing database, gathering information about patients with CRC and treated with targeted agents. Twenty oncology centres in the Czech Republic contributed to this registry. Collected data included patients' characteristics, disease history, cancer treatments, response to treatments and safety. A total of 148 patients treated with regorafenib in clinical practice were analysed. At regorafenib initiation, almost all patients were fully active or slightly restricted in physical activity. Regorafenib was not administered as first-line treatment in any patient. Median progression-free survival was 3.5 months and median overall survival was 9.3 months. One-year survival rate was 44.6 %. Four partial responses were observed and 51 stable diseases. Progression was observed in 66 patients (44.6 %). The main reported adverse events were skin toxicity (5.4 %) and fatigue (2.0 %). Regorafenib is a well-established treatment for pretreated patients with mCRC, however real-life data are scarce. Our results demonstrated slightly better efficacy of regorafenib and better safety profile in patients with mCRC compared to the randomised trials.

  17. Limitations of drug registries to evaluate orphan medicinal products for the treatment of lysosomal storage disorders

    NARCIS (Netherlands)

    Hollak, Carla E. M.; Aerts, Johannes M. F. G.; Aymé, Ségolène; Manuel, Jeremy

    2011-01-01

    Orphan drugs are often approved under exceptional circumstances, requiring submission of additional data on safety and effectiveness through registries. These registries are mainly focused on one drug only and data is frequently incomplete. Some registries also address phenotypic heterogeneity and

  18. Predictors for early diagnosis of cerebral palsy from national registry data

    DEFF Research Database (Denmark)

    Granild-Jensen, Jakob Bie; Rackauskaite, Gija; Flachs, Esben Meulengracht

    2015-01-01

    AIM: As early intervention is important in cerebral palsy (CP), an early diagnosis is desirable. The aim of this study was to establish the median diagnostic age of CP and to identify predictors of an early diagnosis in a population-based cohort. METHOD: Using the Danish National Cerebral Palsy...... Registry (NCPR), we identified 1291 children with CP (764 males, 527 females) born between 1995 and 2003. The date of diagnosis was defined as the day the parents were told that their child was spastic or had CP. We calculated the age of diagnosis and analysed the following predictors: type of CP, degree...

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

    Science.gov (United States)

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

    2013-01-01

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

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

    Directory of Open Access Journals (Sweden)

    Kátia Regina da Silva

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

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

    Science.gov (United States)

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

    2013-01-01

    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

  2. First 25 years of the Hungarian congenital abnormality registry.

    Science.gov (United States)

    Czeizel, A E

    1997-05-01

    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.

  3. National Dyslipidemia Registry of the Spanish Arteriosclerosis Society: Current status.

    Science.gov (United States)

    Pérez-Calahorra, Sofía; Sánchez-Hernández, Rosa M; Plana, Núria; Valdivielso, Pedro; Civeira, Fernando

    Clinical registries are a very effective tool to verify the usual clinical practice, to compare clinical strategies and to improve the knowledge of diagnostic and therapeutic new procedures. The National Registry of Dyslipemias of the Spanish Society of Arteriosclerosis (SEA) is an on-line, retrospective and prospective database where the different Spanish lipid units accredited by the SEA introduce data from patients with disorders of lipid metabolism. The registry was created in 2013, and since then clinical, analytical, genetic and evolutionary data of 4,449 patients have been introduced until June 2017. In the last year the registry has given rise to a considerable number of international publications and there are several more in progress. An ambitious incentive plan for inclusion of patients has been initiated to get the SEA registry as a global reference that helps to improve the knowledge and clinical management of these patients. From the coordinating group of the registry we encourage all SEA partners to collaborate in the multiple forms that the registry allows, and to make it an international scientific reference. Copyright © 2017. Publicado por Elsevier España, S.L.U.

  4. The Danish National Chronic Myeloid Neoplasia Registry

    Directory of Open Access Journals (Sweden)

    Bak M

    2016-10-01

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

  5. Menuiseries des xviie et xviiie siècles Door and window casings in the seventeenth and eighteenth centuries. Paris and Saint Denis. Colours observed

    Directory of Open Access Journals (Sweden)

    Benjamin Mouton

    2008-05-01

    Full Text Available Les couleurs anciennes des menuiseries des portes et des fenêtres de l’architecture des xviie et xviiie siècles se trouvent par sondages sur les témoins d’origine encore conservés. Des observations ont été effectuées systématiquement lors de travaux de restauration et ont livré des résultats très cohérents. Pour les menuiseries des fenêtres, le gris assez soutenu est la règle. L’évolution de l’intensité ne paraît pas, en revanche, suivre une tendance bien affirmée. Rares sont les cas de menuiseries laissées « au naturel ». Les recherches sur les portes cochères sont plus limitées mais confirment l’usage de couleurs très sombres.The original colours of doors and windows in seventeenth- and eighteenth-century buildings can be discovered by carrying out probes on original samples that have survived. Observations were systematically recorded during restoration work and have produced very coherent results. In window casings, a fairly deep grey is the rule. Changes in intensity do not appear to follow a clear trend, however. Few elements of window joinery have been left ‘au naturel’. Research on portes-cochères (carriage gates was more limited but confirms the use of very dark colours.

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

    DEFF Research Database (Denmark)

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

    2011-01-01

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

  7. The National Anesthesia Clinical Outcomes Registry.

    Science.gov (United States)

    Liau, Adrian; Havidich, Jeana E; Onega, Tracy; Dutton, Richard P

    2015-12-01

    The Anesthesia Quality Institute (AQI) was chartered in 2008 by the American Society of Anesthesiologists to develop the National Anesthesia Clinical Outcomes Registry (NACOR). In this Technical Communication, we will describe how data enter NACOR, how they are authenticated, and how they are analyzed and reported. NACOR accepts case-level administrative, clinical, and quality capture data from voluntarily participating anesthesia practices and health care facilities in the United States. All data are transmitted to the AQI in summary electronic files generated by billing, quality capture, and electronic health care record software, typically on a monthly basis. All data elements are mapped to fields in the NACOR schema in accordance with a publicly available data dictionary. Incoming data are loaded into NACOR by AQI technologists and are subject to both manual and automated review to identify systematically missing elements, miscoding, and inadvertent corruption. Data are deidentified in compliance with Health Insurance Portability and Accountability Act regulations. The database server of AQI, which houses the NACOR database, is protected by 2 firewalls within the American Society of Anesthesiologists' network infrastructure; this system has not been breached. The NACOR Participant User File, a deidentified case-level dataset of information from NACOR, is available to researchers at participating institutions. NACOR architecture and the nature of the Participant User File include both strengths and weaknesses.

  8. Italian registry of cardiac magnetic resonance

    Energy Technology Data Exchange (ETDEWEB)

    Francone, Marco [Department of Radiological, Oncological and Pathological Sciences, Sapienza University of Rome (Italy); Di Cesare, Ernesto, E-mail: ernesto.dicesare@cc.univaq.it [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

    2014-01-15

    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.

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

    Directory of Open Access Journals (Sweden)

    Christopher J. Ryerson

    2016-01-01

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

  10. Clinical trials in dentistry in India: Analysis from trial registry

    Science.gov (United States)

    Gowri, S.; Kannan, Sridharan

    2017-01-01

    Introduction: 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. Methodology: 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. Results: 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

  11. EPA Facility Registry Service (FRS): ER_EPLAN

    Data.gov (United States)

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

  12. EPA Facility Registry Service (FRS): ER_RCRATSD

    Data.gov (United States)

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

  13. EPA Facility Registry Service (FRS): RCRA_LQG

    Data.gov (United States)

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

  14. EPA Facility Registry Service (FRS): RCRA_INACTIVE

    Data.gov (United States)

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

  15. EPA Facility Registry Service (FRS): AIRS_AQS

    Data.gov (United States)

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

  16. EPA Facility Registry Service (FRS): RCRA_TRANS

    Data.gov (United States)

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

  17. EPA Facility Registry Service (FRS): PCS_NPDES

    Data.gov (United States)

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

  18. EPA Facility Registry Service (FRS): ER_RMP

    Data.gov (United States)

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

  19. EPA Facility Registry Service (FRS): ALL FRS INTERESTS LAYER

    Data.gov (United States)

    U.S. Environmental Protection Agency — This data provides location and attribute information on all facilities in EPA's Facility Registry Service (FRS) for a internet web feature service . The FRS is an...

  20. EPA Facility Registry Service (FRS): Wastewater Treatment Plants

    Data.gov (United States)

    U.S. Environmental Protection Agency — This GIS dataset contains data on wastewater treatment plants, based on EPA's Facility Registry Service (FRS), EPA's Integrated Compliance Information System (ICIS)...

  1. EPA Facility Registry Service (FRS): RCRA_TSD

    Data.gov (United States)

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

  2. EPA Facility Registry Service (FRS): ER_TSCA

    Data.gov (United States)

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

  3. EPA Facility Registry Service (FRS): PCS_NPDES_MAJOR

    Data.gov (United States)

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

  4. EPA Facility Registry Service (FRS): ER_WWTP_NPDES

    Data.gov (United States)

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

  5. EPA Facility Registry Service (FRS): ER_TRI

    Data.gov (United States)

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

  6. EPA Facility Registry Service (FRS): AIRS_AFS_MAJOR

    Data.gov (United States)

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

  7. Functional Principles of Registry-based Service Discovery

    NARCIS (Netherlands)

    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

  8. EPA Facility Registry Service (FRS): RCRA_ACTIVE

    Data.gov (United States)

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

  9. Clinical features of paediatric pulmonary hypertension : a registry study

    NARCIS (Netherlands)

    Berger, Rolf M. F.; Beghetti, Maurice; Humpl, Tilman; Raskob, Gary E.; Ivy, D. Dunbar; Jing, Zhi-Cheng; Bonnet, Damien; Schulze-Neick, Ingram; Barst, Robyn J.

    2012-01-01

    Background Paediatric pulmonary hypertension, is an important cause of morbidity and mortality, and is insufficiently characterised in children. The Tracking Outcomes and Practice in Pediatric Pulmonary Hypertension (TOPP) registry is a global, prospective study designed to provide information about

  10. EPA Facility Registry Service (FRS): ER_CERCLIS

    Data.gov (United States)

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

  11. EPA Facility Registry Service (FRS): Facility Interests Dataset

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are available in...

  12. EPA Facility Registry Service (FRS): Facility Interests Dataset Download

    Data.gov (United States)

    U.S. Environmental Protection Agency — This downloadable data package consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are...

  13. EPA Facility Registry Service (FRS): Facility Interests Dataset - Intranet

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are available in...

  14. EPA Facility Registry Service (FRS): Facility Interests Dataset - Intranet Download

    Data.gov (United States)

    U.S. Environmental Protection Agency — This downloadable data package consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are...

  15. EPA Facility Registry Service (FRS): ER_FRP

    Data.gov (United States)

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

  16. EPA Facility Registry Service (FRS): AIRS_AFS

    Data.gov (United States)

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

  17. Environmental Protection Agency (EPA) Facility Registry Service (FRS) Power Plants

    Data.gov (United States)

    Department of Homeland Security — This GIS dataset contains data on wastewater treatment plants, based on EPA's Facility Registry Service (FRS) and NPDES, along with Clean Watersheds Needs Survey...

  18. EPA Facility Registry Service (FRS): CERCLIS_NPL

    Data.gov (United States)

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

  19. The fifteenth-seventeenth century transformation of abbacus algebra: Perhaps – though not thought of by Edgar Zilsel and Joseph Needham – the best illustration of the `Zilsel-Needham thesis'

    DEFF Research Database (Denmark)

    Høyrup, Jens

    2011-01-01

    In 1942, Edgar Zilsel proposed that the sixteenth–seventeenth-century emergence of Modern science was produced neither by the university tradition, nor by the Humanist current of Renaissance culture, nor by craftsmen or other practitioners, but through an interaction between all three groups...... in which all were indispensable for the outcome. He only included mathematics via its relation to the “quantitative spirit”. The present study tries to apply Zilsel’s perspective to the emergence of the Modern algebra of Viète and Descartes (etc.), by tracing the reception of algebra within the Latin...

  20. Surveillance Evaluation of the National Cancer Registry in Sabah, Malaysia.

    Science.gov (United States)

    Jeffree, Saffree Mohammad; Mihat, Omar; Lukman, Khamisah Awang; Ibrahim, Mohd Yusof; Kamaludin, Fadzilah; Hassan, Mohd Rohaizat; Kaur, Nirmal; Myint, Than

    2016-01-01

    Cancer is the fourth leading cause of death in Sabah Malaysia with a reported agestandardized incidence rate was 104.9 per 100,000 in 2007. The incidence rate depends on nonmandatory notification in the registry. Underreporting will provide the false picture of cancer control program effectiveness. The present study was to evaluate the performance of the cancer registry system in terms of representativeness, data quality, simplicity, acceptability and timeliness and provision of recommendations for improvement. The evaluation was conducted among key informants in the National Cancer Registry (NCR) and reporting facilities from FebMay 2012 and was based on US CDC guidelines. Representativeness was assessed by matching cancer case in the Health Information System (HIS) and state pathology records with those in NCR. Data quality was measured through case finding and reabstracting of medical records by independent auditors. The reabstracting portion comprised 15 data items. Selfadministered questionnaires were used to assess simplicity and acceptability. Timeliness was measured from date of diagnosis to date of notification received and data dissemination. Of 4613 cancer cases reported in HIS, 83.3% were matched with cancer registry. In the state pathology centre, 99.8% was notified to registry. Duplication of notification was 3%. Data completeness calculated for 104 samples was 63.4%. Registrars perceived simplicity in coding diagnosis as moderate. Notification process was moderately acceptable. Median duration of interval 1 was 5.7 months. The performances of registry's attributes are fairly positive in terms of simplicity, case reporting sensitivity, and predictive value positive. It is moderately acceptable, data completeness and inflexible. The usefulness of registry is the area of concern to achieve registry objectives. Timeliness of reporting is within international standard, whereas timeliness to data dissemination was longer up to 4 years. Integration between

  1. Cancer registries in four provinces in Turkey: a case study

    Directory of Open Access Journals (Sweden)

    Stillman Frances A

    2012-10-01

    Full Text Available Abstract Background The burden of cancer affects all countries; while high-income countries have the capacity and resources to establish comprehensive cancer control programs, low and middle-income countries have limited resources to develop such programs. This paper examines factors associated with the development of cancer registries in four provinces in Turkey. It looks at the progress made by these registries, the challenges they faced, and the lessons learned. Other countries with similar resources can benefit from the lessons identified in this case study. Methods A mix of qualitative case study methods including key informant interviews, document review and questionnaires was used. Results This case study showed that surveillance systems that accurately report current cancer-related data are essential components of a country’s comprehensive cancer control program. At the initial stages, Turkey established one cancer registry with international support, which was used as a model for other registries. The Ministry of Health recognized the value of the registry data and its contribution to the country’s cancer control program and is supporting sustainability of these registries as a result. Conclusions This study demonstrates how Turkey was able to use resources from multiple sources to enhance its population based cancer registry system in four provinces. With renewed international interest in non-communicable diseases and cancer following the 2011 UN high-level meeting on NCDs, low- and middle- income countries can benefit from Turkey’s experience. Other countries can utilize lessons learned from Turkey as they address cancer burden and establish their own registries.

  2. Data available from birth and death registries and cancer registries in the United States

    Energy Technology Data Exchange (ETDEWEB)

    Wallin, B.L. [Lawrence Berkeley Lab., CA (United States)]|[Chicago Medical School, IL (United States); Houser, A.R. [Lawrence Berkeley Lab., CA (United States); Merrill, D.W.; Selvin, S. [Lawrence Berkeley Lab., CA (United States)]|[California Univ., Berkeley, CA (United States). Dept. of Biomedical and Environmental Health Sciences

    1994-01-01

    In the United States, cancer registries have been compiling data for decades, and state vital statistics offices have been compiling birth and death data for nearly a century. Although this information has been well used for disease surveillance and various studies, it could be better exploited by making it more readily available, reducing the duplication of effort that occurs when researchers at the private, city, county, state, and federal levels work separately on their data collection and disease investigations. This report summarizes the nationwide availability of birth and death records and cancer registry data, with particular emphasis on subcounty geographic detail, such as zip code and census tract. Birth and death data are available at the county level for the entire United States from the National Center for Health Statistics. However, county level data are inadequate for small area studies of potential environmental hazards. Hazards of current interest to the Department of Energy (DOE) include DOE facilities, nuclear power plants, and sources of electromagnetic radiation such as broadcasting towers and power lines.

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

    Science.gov (United States)

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

    2017-12-01

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

  4. Development of the Andalusian Registry of Patients Receiving Community Case Management, for the follow-up of people with complex chronic diseases.

    Science.gov (United States)

    Morales-Asencio, Jose M; Kaknani-Uttumchandani, Shakira; Cuevas-Fernández-Gallego, Magdalena; Palacios-Gómez, Leopoldo; Gutiérrez-Sequera, José L; Silvano-Arranz, Agustina; Batres-Sicilia, Juan Pedro; Delgado-Romero, Ascensión; Cejudo-Lopez, Ángela; Trabado-Herrera, Manuel; García-Lara, Esteban L; Martin-Santos, Francisco J; Morilla-Herrera, Juan C

    2015-10-01

    Complex chronic diseases are a challenge for the current configuration of health services. Case management is a service frequently provided for people with chronic conditions, and despite its effectiveness in many outcomes, such as mortality or readmissions, uncertainty remains about the most effective form of team organization, structures and the nature of the interventions. Many processes and outcomes of case management for people with complex chronic conditions cannot be addressed with the information provided by electronic clinical records. Registries are frequently used to deal with this weakness. The aim of this study was to generate a registry-based information system of patients receiving case management to identify their clinical characteristics, their context of care, events identified during their follow-up, interventions developed by case managers and services used. The study was divided into three phases, covering the detection of information needs, the design and its implementation in the health care system, using literature review and expert consensus methods to select variables that would be included in the registry. A total of 102 variables representing structure, processes and outcomes of case management were selected for their inclusion in the registry after the consensus phase. A web-based registry with modular and layered architecture was designed. The framework follows a pattern based on the model-view-controller approach. In its first 6 months after the implementation, 102 case managers have introduced an average number of 6.49 patients each one. The registry permits a complete and in-depth analysis of the characteristics of the patients who receive case management, the interventions delivered and some major outcomes as mortality, readmissions or adverse events. © 2015 John Wiley & Sons, Ltd.

  5. Key findings from a prospective trauma registry at a regional hospital in Southwest Cameroon.

    Directory of Open Access Journals (Sweden)

    Alain Chichom-Mefire

    Full Text Available Trauma is a leading cause of morbidity and mortality worldwide. Data characterizing the burden of trauma in Cameroon is limited. Regular, prospective injury surveillance can address the shortcomings of existing hospital administrative logs and medical records. This study aims to characterize trauma as seen at the emergency department (ED of Limbe Regional Hospital (LRH and assess the completeness of data obtained by a trauma registry.From January 2008 to October 2013, we prospectively captured data on injured patients using a strategically designed, context-relevant trauma registry instrument. Indicators around patient demographics, injury characteristics, delays in accessing care, and treatment outcomes were recorded. Descriptive, bivariate, and multivariate statistical analyses were conducted. About 5,617 patients, aged from 0.5-95years (median age of 26 years, visited the LRH ED with an injury; 67% were male. Students (27% were the most affected occupation category. Road traffic injuries (RTIs (56%, assault (22%, and domestic injuries (13% were the leading causes of injury. Two-thirds of RTIs were motorcycle-related. Working in transportation (AOR 4.42, p<0.001 and law enforcement (AOR 1.73, p = 0.004 were significant predictors of having a RTI. The trauma registry showed a significant improvement in completeness of all data (p<0.001 and it improved over time compared with previous administrative records. However, proportions of missing data still ranged from 0.5% to 8.2% and involved respiratory rate or Glasgow Coma scale.Implementation of a context-appropriate trauma registry in resource-constrained settings is feasible. Providing valuable, high-quality data, the trauma registry can inform trauma care quality improvement efforts and policy development. Study findings indicate the need for injury prevention interventions and policies that will prioritize high-risks groups, such as those aged 20-29 years, and those in occupations requiring

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

    DEFF Research Database (Denmark)

    Gordon, Hannah; Langholz, Ebbe

    2017-01-01

    The 2015 EpiCom survey evaluated population, patient, and research registries across Europe. Information was collected from 38 countries. The registries included those falling within the remit of national statistics, hospital databases, twin and multiplex registries, inflammatory bowel disease [IBD......] 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...... information from health and social registries: 30 delegates reported that their home country has a hospital database; 21 have adverse events registers, although the majority only mandate reporting of events that occur during drug trials; 17 countries have twin registries; And IBD registries have been...

  7. Evolution of Tonal Organization in Music Optimizes Neural Mechanisms in Symbolic Encoding of Perceptual Reality. Part-2: Ancient to Seventeenth Century.

    Science.gov (United States)

    Nikolsky, Aleksey

    2016-01-01

    This paper reveals the way in which musical pitch works as a peculiar form of cognition that reflects upon the organization of the surrounding world as perceived by majority of music users within a socio-cultural formation. Part-1 of this paper described the origin of tonal organization from verbal speech, its progress from indefinite to definite pitch, and the emergence of two main harmonic orders: heptatonic and pentatonic, each characterized by its own method of handling tension at both domains, of tonal and social organization. Part-2, here, completes the line of historic development from Antiquity to seventeenth century. Vast archeological data is used to identify the perception of music structures that tells apart the temple/palace music of urban civilizations and the folk music of village cultures. The "mega-pitch-set" (MPS) organization is found to constitute the principal contribution of a math-based music theory to a new diatonic order. All ramifications for psychology of music are discussed in detail. "Non-octave hypermode" is identified as a peculiar homogenous type of MPS, typical for plainchant. The origin of chromaticism is thoroughly examined as an earmark of "art-music" that opposes earlier forms of folk music. The role of aesthetic emotions in formation of chromatic alteration is defined. The development of chromatic system is traced throughout history, highlighting its modern implementation in "hemiolic modes." The connection between tonal organization in music and spatial organization in pictorial art is established in the Baroque culture, and then tracked back to prehistoric times. Both are shown to present a form of abstraction of environmental topographic schemes, and music is proposed as the primary medium for its cultivation through the concept of pitch. The comparison of stages of tonal organization and typologies of musical texture is used to define the overall course of tonal evolution. Tonal organization of pitch reflects the culture of

  8. Frailty Intervention Trial (FIT

    Directory of Open Access Journals (Sweden)

    Lockwood Keri

    2008-10-01

    Full Text Available Abstract Background Frailty is a term commonly used to describe the condition of an older person who has chronic health problems, has lost functional abilities and is likely to deteriorate further. However, despite its common use, only a small number of studies have attempted to define the syndrome of frailty and measure its prevalence. The criteria Fried and colleagues used to define the frailty syndrome will be used in this study (i.e. weight loss, fatigue, decreased grip strength, slow gait speed, and low physical activity. Previous studies have shown that clinical outcomes for frail older people can be improved using multi-factorial interventions such as comprehensive geriatric assessment, and single interventions such as exercise programs or nutritional supplementation, but no interventions have been developed to specifically reverse the syndrome of frailty. We have developed a multidisciplinary intervention that specifically targets frailty as defined by Fried et al. We aim to establish the effects of this intervention on frailty, mobility, hospitalisation and institutionalisation in frail older people. Methods and Design A single centre randomised controlled trial comparing a multidisciplinary intervention with usual care. The intervention will target identified characteristics of frailty, functional limitations, nutritional status, falls risk, psychological issues and management of chronic health conditions. Two hundred and thirty people aged 70 and over who meet the Fried definition of frailty will be recruited from clients of the aged care service of a metropolitan hospital. Participants will be followed for a 12-month period. Discussion This research is an important step in the examination of specifically targeted frailty interventions. This project will assess whether an intervention specifically targeting frailty can be implemented, and whether it is effective when compared to usual care. If successful, the study will establish a

  9. Epidemiology of hypospadias in Europe: a registry-based study.

    Science.gov (United States)

    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

    2015-12-01

    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.

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

    Science.gov (United States)

    Chesney, Russell W; Patters, Andrea B

    2013-12-01

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

  11. The German national registry for primary immunodeficiencies (PID).

    Science.gov (United States)

    Gathmann, B; Goldacker, S; Klima, M; Belohradsky, B H; Notheis, G; Ehl, S; Ritterbusch, H; Baumann, U; Meyer-Bahlburg, A; Witte, T; Schmidt, R; Borte, M; Borte, S; Linde, R; Schubert, R; Bienemann, K; Laws, H-J; Dueckers, G; Roesler, J; Rothoeft, T; Krüger, R; Scharbatke, E C; Masjosthusmann, K; Wasmuth, J-C; Moser, O; Kaiser, P; Groß-Wieltsch, U; Classen, C F; Horneff, G; Reiser, V; Binder, N; El-Helou, S M; Klein, C; Grimbacher, B; Kindle, G

    2013-08-01

    In 2009, a federally funded clinical and research consortium (PID-NET, http://www.pid-net.org) established the first national registry for primary immunodeficiencies (PID) in Germany. The registry contains clinical and genetic information on PID patients and is set up within the framework of the existing European Database for Primary Immunodeficiencies, run by the European Society for Primary Immunodeficiencies. Following the example of other national registries, a central data entry clerk has been employed to support data entry at the participating centres. Regulations for ethics approvals have presented a major challenge for participation of individual centres and have led to a delay in data entry in some cases. Data on 630 patients, entered into the European registry between 2004 and 2009, were incorporated into the national registry. From April 2009 to March 2012, the number of contributing centres increased from seven to 21 and 738 additional patients were reported, leading to a total number of 1368 patients, of whom 1232 were alive. The age distribution of living patients differs significantly by gender, with twice as many males than females among children, but 15% more women than men in the age group 30 years and older. The diagnostic delay between onset of symptoms and diagnosis has decreased for some PID over the past 20 years, but remains particularly high at a median of 4 years in common variable immunodeficiency (CVID), the most prevalent PID. © 2013 British Society for Immunology.

  12. OCLC Registry of Digital Masters – Opportunities for European Cooperation

    Directory of Open Access Journals (Sweden)

    Janet Lees

    2005-11-01

    Full Text Available I would like to thank the Preservation Division for the invitation to participate in the programme today. I would also like to thank the LIBER Board for their interest in the early stages of this project culminating in the announcement LIBER President Erland Kolding Nielsen made last night about LIBER support and collaboration with OCLC PICA with respect to the Digital Registry. This initiative reflects my new role within OCLC PICA, which is to identify opportunities for joint development with our major shareholder OCLC, and sometimes 3rd parties such as LIBER. My main purpose today is to provide a descriptive paper to inform LIBER members about the OCLC Digital Registry and to outline the possible role for LIBER and its membership in a model for European participation. My presentation will be in three phases: the need for a registry, a description of the Registry and finally, and perhaps most importantly, to outline opportunities for LIBER and its members in establishing a model for European contribution. We are all familiar with the concept of a registry through our participation in union catalogues and perhaps also from our experience with microfilms through the European Register of Microform Masters (EROMM hosted by our friends in Göttingen.

  13. The burden and impact of vertigo: findings from the REVERT patient registry

    Directory of Open Access Journals (Sweden)

    Heike eBenecke

    2013-10-01

    Full Text Available Objective: Despite the high prevalence of vertigo globally and an acknowledged, but underreported, effect on an individual’s wellbeing, few studies have evaluated the burden on healthcare systems and society. This study was aimed to quantitatively determine the impact of vertigo on healthcare resource use and work productivity. Methods: The economic burden of vertigo was assessed through a multi-country, non-interventional, observational registry of vertigo patients: the Registry to Evaluate the Burden of Disease in Vertigo (REVERT. Patients included were those with a new diagnosis of Meniere’s disease (MD, benign paroxysmal positional vertigo (BPPV, other vertigo of peripheral vestibular origin or peripheral vestibular vertigo of unknown origin. Results: A total of 4,294 patients at 618 centers in 13 countries were included during the registry. Of the 4,105 patients analyzed, only half were in employment. Among this working patient population, 69.8% had reduced their workload, 63.3% had lost working days and 4.6% had changed and 5.7% had quit their jobs, due to vertigo symptoms. Use of healthcare services among patients was high. In the 3 months preceding Visit 1, patients used emergency services 0.4 ± 0.9 times, primary care consultations 1.6 ± 1.8 times and specialist consultations 1.4 ± 2.0 times (all mean ± SD. A mean of 2.0 ± 5.4 days/patient was also spent in hospital due to vertigo.Conclusions: In addition to the negative impact on the patient from a humanistic perspective, vertigo has considerable impact on work productivity and healthcare resource use.

  14. Safety and performance of targeted renal therapy: the Be-RITe! Registry.

    Science.gov (United States)

    Weisz, Giora; Filby, Steven J; Cohen, Mauricio G; Allie, David E; Weinstock, Barry S; Kyriazis, Dimitris; Walker, Craig M; Moses, Jeffrey W; Danna, Paolo; Fearon, William F; Sachdev, Naveen; Wiechmann, Bret N; Vora, Kishor; Findeiss, Laura; Price, Matthew J; Mehran, Roxana; Leon, Martin B; Teirstein, Paul S

    2009-02-01

    To evaluate the safety and patterns of use of targeted renal therapy (TRT) with the Benephit system. TRT, the delivery of therapeutic agents directly to the kidneys by renal arterial infusion, has the advantage of providing a higher local effective dose with potentially greater renal effects, while limiting systemic adverse effects due to renal first-pass elimination. The Benephit System Renal Infusion Therapy (Be-RITe!) Multicenter Registry was a post-market registry following patients treated using the Benephit systems for TRT. The registry enrolled 501 patients (332 men; mean age 72.2+/-9.5 years) at high risk for contrast-induced nephropathy (CIN) during coronary or peripheral angiography/intervention or cardiovascular surgery. The Mehran score was used to compare the actual to predicted incidence of CIN within 48 hours post procedure. Bilateral renal artery cannulation was successful in 94.2%, with a mean cannulation time of 2.0 minutes. Either fenoldopam mesylate, sodium bicarbonate, alprostadil, or B-type natriuretic peptide (BNP) was infused for 184+/-212 minutes. Mean creatinine levels did not change significantly (baseline, 24, and 48 hours post procedure: 1.95, 1.99, and 1.98 mg/dL, respectively; p = NS). In 285 patients who received TRT with fenoldopam and were followed for at least 48 hours, the incidence of CIN was 71% lower than predicted (8.1% actual CIN versus 28.0% predicted; p<0.0001). Only 4 (1.4%) patients required dialysis (versus the 2.6% predicted rate, p = NS). The Benephit system and TRT during coronary and endovascular procedures in patients at high risk for renal failure is simple to use and safe. With the infusion of intrarenal fenoldopam, the incidence of CIN was significantly lower than predicted by risk score calculations.

  15. Existing data sources for clinical epidemiology: The Western Denmark Heart Registry

    Directory of Open Access Journals (Sweden)

    Morten Schmidt

    2010-05-01

    Full Text Available Morten Schmidt1, Michael Maeng2, Carl-Johan Jakobsen3, Morten Madsen1, Leif Thuesen2, Per Hostrup Nielsen4, Hans Erik Bøtker2, Henrik Toft Sørensen11Department of Clinical Epidemiology, 2Department of Cardiology, 3Department of Anesthesia and Intensive Care, 4Department of Cardiothoracic Surgery, Aarhus University Hospital-Skejby, DenmarkBackground: The Western Denmark Heart Registry (WDHR has not previously been described as a research tool in clinical epidemiology.Objectives: We examined the setting, organization, content, data quality, and research potential of the WDHR.Method: We collected information from members of the WDHR organization, including the committee of representatives, the board, the data management group, and physicians reporting to the database. We retrieved 2008 data from the WDHR to illustrate database variables.Results: The WDHR is a clinical database within a population-based health care system. It was launched on 1 January 1999 to monitor and improve the quality of cardiac intervention in Western Denmark (population: 3.3 million and to allow for clinical and health-service research. More than 200,000 interventions, with 50–150 variables each, have been registered. The data quality is ensured by automatic validation rules at data entry combined with systematic validation procedures and random spot-checks after entry.Conclusions: The WDHR is a valuable research tool because it provides ongoing longitudinal registration of detailed patient and procedural data. The Danish national health care system enables this research because it allows complete follow-up for medical events after cardiac intervention by linkage with multiple medical databases.Keywords: cardiac surgical procedures, catheterization, coronary angiography, database, epidemiology, registries

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

    Directory of Open Access Journals (Sweden)

    Mindell Seidlin

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

  17. Mindfulness Interventions.

    Science.gov (United States)

    Creswell, J David

    2017-01-03

    Mindfulness interventions aim to foster greater attention to and awareness of present moment experience. There has been a dramatic increase in randomized controlled trials (RCTs) of mindfulness interventions over the past two decades. This article evaluates the growing evidence of mindfulness intervention RCTs by reviewing and discussing (a) the effects of mindfulness interventions on health, cognitive, affective, and interpersonal outcomes; (b) evidence-based applications of mindfulness interventions to new settings and populations (e.g., the workplace, military, schools); (c) psychological and neurobiological mechanisms of mindfulness interventions; (d) mindfulness intervention dosing considerations; and (e) potential risks of mindfulness interventions. Methodologically rigorous RCTs have demonstrated that mindfulness interventions improve outcomes in multiple domains (e.g., chronic pain, depression relapse, addiction). Discussion focuses on opportunities and challenges for mindfulness intervention research and on community applications.

  18. Patient-reported outcome measures in arthroplasty registries

    DEFF Research Database (Denmark)

    Rolfson, Ola; Bohm, Eric; Franklin, Patricia

    2016-01-01

    The International Society of Arthroplasty Registries (ISAR) Patient-Reported Outcome Measures (PROMs) Working Group have evaluated and recommended best practices in the selection, administration, and interpretation of PROMs for hip and knee arthroplasty registries. The 2 generic PROMs in common use...... unsatisfied, dissatisfied, neutral, satisfied, or very satisfied). Survey logistics include patient instructions, paper- and electronic-based data collection, reminders for follow-up, centralized as opposed to hospital-based follow-up, sample size, patient- or joint-specific evaluation, collection intervals......, frequency of response, missing values, and factors in establishing a PROMs registry program. The Working Group recommends including age, sex, diagnosis at joint, general health status preoperatively, and joint pain and function score in case-mix adjustment models. Interpretation and statistical analysis...

  19. REAC/TS Radiation Accident Registry: An Overview

    Energy Technology Data Exchange (ETDEWEB)

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

    2012-12-12

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

  20. Health technology assessment in Australia: a role for clinical registries?

    Science.gov (United States)

    Scott, Anna Mae

    2017-03-01

    Objective Health technology assessment (HTA) is a process of assessing evidence to inform policy decisions about public subsidy of new drugs and medical procedures. Where evidence is uncertain but the technology itself is promising, funders may recommend funding on an interim basis. It is unknown whether evidence from clinical registries is used to resolve uncertainties identified in interim-funded decisions made by Australian HTA bodies. Therefore, the present study evaluated the role of evidence from clinical registries in resolving evidence uncertainties identified by the Medical Services Advisory Committee (MSAC). Methods All HTAs considered by MSAC between 1998 and 2015 were reviewed and assessments that recommended interim funding were identified. The MSAC website was searched to identify reassessments of these recommendations and sources of evidence used to resolve the uncertainties were identified. Results Of 173 HTA reports considered by MSAC, 17 (10%) contained an interim funding recommendation. Eight recommendations cited uncertainty around safety, 15 cited uncertainty around clinical effectiveness and 13 cited uncertainty around economics (cost-effectiveness and/or budget impact). Of the 17 interim funding recommendations, 11 (65%) have been reassessed. Only two reassessments relied on clinical registry evidence to resolve evidence gaps identified at the time of the interim funding recommendation. Conclusions Clinical registries are underused as a source of evidence for resolving uncertainties around promising new health technologies in Australia. An open dialogue between stakeholders on the role of registries in this context is needed. What is known about the topic? HTA is a process of assessing the evidence to inform policy decisions about public subsidy of new health technologies (e.g. pharmaceuticals, diagnostic tests, medical procedures). Where evidence is uncertain but the technology under evaluation is promising, funders may recommend the funding

  1. National Registry of Health Facilities: data reliability evidence.

    Science.gov (United States)

    Rocha, Thiago Augusto Hernandes; Silva, Núbia Cristina da; Barbosa, Allan Claudius Queiroz; Amaral, Pedro Vasconcelos; Thumé, Elaine; Rocha, João Victor; Alvares, Viviane; Facchini, Luiz Augusto

    2018-01-01

    This study compared the reliability of a data group registered in the secondary databases of the National Registry of Health Facilities. A survey was conducted in 2,777 with hospitals to achieve this objective. Visited hospitals provided information on equipment, geographic location, operating status and number of beds. Regarding matching data between visited hospitals and the National Registry, it can be noted that the operating status was updated in 89% of cases, the number of beds in 44%, 82% had the correct amount of equipment and 63% had accurate geographic coordinates. These findings point to a good reliability of information from the National Registry of Health Facilities, regarding the compared categories, excepting for data on the number of registered beds and for some equipment. As a further development of this work, we stress the need to discuss strategies and incentives to improve the reliability of data that still have inconsistencies, in order to improve the instruments used to formulate public policies.

  2. Development of an International Prostate Cancer Outcomes Registry.

    Science.gov (United States)

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

    2016-04-01

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

  3. Secondary prevention in cognitive frailty: the Treviso Dementia Registry

    Directory of Open Access Journals (Sweden)

    Maurizio Gallucci

    2016-09-01

    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.

  4. The Medical Birth Registry of Norway – An international perspective

    Directory of Open Access Journals (Sweden)

    Allen J. Wilcox

    2007-01-01

    Full Text Available Some of the most practical questions of perinatal medicine are regarding couples who have had pregnancy problems in the past, and their risk of having such problems in future pregnancies. For example, if a couple has a child with a birth defect, what are their chances that their next child will have a defect? The key to answering such questions is the availability of linked data such as those provided by the Medical Birth Registry of Norway. Such linked data provide a unique resource for addressing a broad range of questions in perinatal epidemiology. The Medical Birth Registry of Norway has been a pioneer in answering such questions.

  5. The Medical Birth Registry of Norway – An international perspective

    Directory of Open Access Journals (Sweden)

    Allen J. Wilcox

    2009-10-01

    Full Text Available Some of the most practical questions of perinatal medicine are regarding couples who have had pregnancy problems in the past, and their risk of having such problems in future pregnancies. For example, if a couple has a child with a birth defect, what are their chances that their next child will have a defect? The key to answering such questions is the availability of linked data such as those provided by the Medical Birth Registry of Norway. Such linked data provide a unique resource for addressing a broad range of questions in perinatal epidemiology. The Medical Birth Registry of Norway has been a pioneer in answering such questions

  6. Toxic substances registry system: Index of material safety data sheets

    Science.gov (United States)

    1993-01-01

    The Jan. 1993 Revision of the KSC Toxic Substances Registry System (TSRS) Index of Material Safety Data Sheets (MSDS's) is presented. The listed MSDS's reflect product inventories and associated MSDS's which were submitted to the Toxic Substance Registry Data Base maintained by the Base Operations Contractors of the Biomedical Operations and Research Office of KSC. The purpose of the index is to provide a means of accessing information on the hazards associated with the toxic and otherwise hazardous chemicals stored and used at KSC. Indices are provided for manufacturers, trademarks, and stock numbers.

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

    Science.gov (United States)

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

    2017-06-01

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

  8. New Horizons of Acute Myocardial Infarction: From the Korea Acute Myocardial Infarction Registry

    Science.gov (United States)

    Lee, Ki Hong; Ahn, Youngkeun; Cho, Myeong Chan; Kim, Chong Jin; Kim, Young Jo

    2013-01-01

    As the first nationwide Korean prospective multicenter data collection registry, the Korea Acute Myocardial Infarction Registry (KAMIR) launched in November 2005. Through a number of innovative approaches, KAMIR suggested new horizons about acute myocardial infarction (AMI) which contains unique features of Asian patients from baseline characteristics to treatment strategy. Obesity paradox was existed in Korean AMI patients, whereas no gender differences among them. KAMIR score suggested new risk stratifying method with increased convenience and an enhanced accuracy for the prediction of adverse outcomes. Standard loading dose of clopidogrel was enough for Asian AMI patients. Triple antiplatelet therapy with aspirin, clopidogrel and cilostazol could improve clinical outcomes than dual antiplatelet therapy with aspirin and clopidogrel. Statin improved clinical outcomes even in AMI patients with very low LDL-C levels. The rate of percutaneous coronary intervention was higher and door-to-balloon time was shorter than the previous reports. Zotarolimus eluting stents as the 2nd generation drug-eluting stent (DES) was not superior to the 1st generation DES, in contrast to the western AMI studies. KAMIR made a cornerstone in the study of Korean AMI and expected to be new standards of care for AMI with the renewal of KAMIR design to overcome its pitfalls. PMID:23399991

  9. Down syndrome: issues to consider in a national registry, research database and biobank.

    Science.gov (United States)

    McCabe, Linda L; McCabe, Edward R B

    2011-01-01

    As the quality of life for individuals with Down syndrome continues to improve due to anticipatory healthcare, early intervention, mainstreaming in schools, and increased expectations, the lack of basic information regarding individuals with Down syndrome is being recognized, and the need to facilitate research through a national registry, research database and biobank is being discussed. We believe that there should not be ownership of the samples and information, but instead prefer stewardship of the samples and information to benefit the participants who provided them. We endorse a model with data and sample managers and a research review board to interface between the investigators and participants. Information and samples would be coded, and only a few data managers would know the relationship between the codes and identifying information. Research results once published should be included in an online newsletter. If appropriate, individual results should be shared with participants. A Down syndrome registry, research database and biobank should be accountable to participants, families, medical care providers, government, and funding sources. Copyright © 2011 Elsevier Inc. All rights reserved.

  10. An assessment of the quality of the I-DSD and the I-CAH registries - international registries for rare conditions affecting sex development.

    Science.gov (United States)

    Kourime, M; Bryce, J; Jiang, J; Nixon, R; Rodie, M; Ahmed, S F

    2017-03-20

    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.

  11. The regional myocardial infarction registry of Saxony-Anhalt (RHESA) in Germany - rational and study protocol.

    Science.gov (United States)

    Bohley, Stefanie; Trocchi, Pietro; Robra, Bernt-Peter; Mau, Wilfried; Stang, Andreas

    2015-06-09

    In 2012 the age-standardized acute myocardial infarction (AMI) mortality rate was in the federal state Saxony-Anhalt 67 deaths per 100.000 whereas in Germany the AMI-rate was 47 deaths per 100.000. The rate in Saxony-Anhalt was therefore 43 % above the national average. Many factors may explain this above-average AMI mortality rate: First, the prevalence of cardiovascular risk factors (e.g. arterial hypertension, diabetes mellitus, smoking) in Saxony-Anhalt is the highest among all the Federal States of Germany. Second, structural health care for patients with AMI is potentially deficient (e.g. insufficient number of percutaneous coronary intervention-centers or deficits in the pre-hospital logistics of care). Third, the pre- and in-hospital process quality of health care for patients with AMI is possibly insufficient (e.g. time to reperfusion therapy). In July 2013 we established the regional myocardial infarction registry of Saxony-Anhalt (Regionales Herzinfarktregister in Sachsen-Anhalt, RHESA). RHESA is a population-based registry in the eastern part of Germany. Aims of RHESA are to calculate the AMI morbidity and mortality rates. Furthermore we study the factors that may potentially influence these rates in Saxony-Anhalt. RHESA is a population-based registry of patients with fatal or non-fatal AMI that was established in July 2013. The registry population comprises inhabitants aged 25 years or more of the city of Halle (Saale) (n = 179.000) and inhabitants of the rural district Altmark (n = 165.000) in the federal state Saxony-Anhalt, Germany. The main objectives of RHESA are to provide detailed estimates of the burden of AMI in Saxony-Anhalt which is the federal state with the highest AMI mortality rate in Germany and to investigate factors that influence morbidity and mortality rates due to AMI. Data collected in RHESA enable us to assess different levels of quality of health care of patients with AMI (structural, process and outcome). RHESA

  12. Pediatric registries at the Food and Drug Administration: design aspects that increase their likelihood of success.

    Science.gov (United States)

    Winiecki, Scott K; Tejero-Taldo, M Isabel; Avant, Debbie; Murphy, Dianne; McMahon, Ann W

    2016-05-01

    To determine aspects of the design of pediatric registries that contribute to the success of registries conducted as a postmarketing study following approval of drugs or biological products by the US Food and Drug Administration. Pediatric registries for drugs and biological products were identified by searching the US Food and Drug Administration Postmarketing Requirements and Commitments database. Based on the recruitment of patients, the meeting of predetermined deadlines, and the submission of data, we classified studies as successful, unsuccessful, or unevaluable. Design aspects of successful and unsuccessful registries were examined for commonalities. Thirty-eight studies were identified, and ten registries met the criteria for successful. Four (40%) successful registries utilized a registry established prior to product approval, and six (60%) were disease-based. Among unsuccessful registries, none were disease-based or utilized a pre-existing registry. Characteristics identified as more common to successful registries included utilizing a disease-based registry and a registry established prior to product approval. Future studies might examine a larger sample of registries to see if these aspects consistently result in successful studies. Published 2015. This article is a U.S. Government work and is in the public domain in the USA. Published 2015. This article is a U.S. Government work and is in the public domain in the USA.

  13. Establishing a Twin Registry in Guinea-Bissau

    DEFF Research Database (Denmark)

    Bjerregaard-Andersen, Morten; Gomes, Margarida A; Joaquím, Luis C

    2013-01-01

    represent a powerful tool. Though twin studies have been carried out by the Bandim Health Project for more than 30 years, the renewed registry described here was officially established in 2009 and includes both a cohort of newborn twins and a cohort of young and adult twins. Currently more than 1,500 twins...

  14. Data Type Registry - Cross Road Between Catalogs, Data And Semantics

    Science.gov (United States)

    Richard, S. M.; Zaslavsky, I.; Bristol, S.

    2017-12-01

    As more data become accessible online, the opportunity is increasing to improve search for information within datasets and for automating some levels of data integration. A prerequisite for these advances is indexing the kinds of information that are present in datasets and providing machine actionable descriptions of data structures. We are exploring approaches to enabling these capabilities in the EarthCube DigitalCrust and Data Discovery Hub Building Block projects, building on the Data type registry (DTR) workgroup activity in the Research Data Alliance. We are prototyping a registry implementation using the CNRI Cordra platform and API to enable 'deep registration' of datasets for building hydrogeologic models of the Earth's Crust, and executing complex science scenarios for river chemistry and coral bleaching data. These use cases require the ability to respond to queries such as: What are properties of Entity X; What entities include property Y (or L, M, N…), and What DataTypes are about Entity X and include property Y. Development of the registry to enable these capabilities requires more in-depth metadata than is commonly available, so we are also exploring approaches to analyzing simple tabular data to automate recognition of entities and properties, and assist users with establishing semantic mappings to data integration vocabularies. This poster will review the current capabilities and implementation of a data type registry.

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

    Directory of Open Access Journals (Sweden)

    Vincent Duron

    2016-10-01

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

  16. Is there evidence for correct diagnosis in cystic fibrosis registries?

    Science.gov (United States)

    Thomas, Muriel; Lemonnier, Lydie; Gulmans, Vincent; Naehrlich, Lutz; Vermeulen, François; Cuppens, Harry; Castellani, Carlo; Norek, Aleksandra; De Boeck, Kris

    2014-05-01

    Cystic fibrosis (CF) spans a wide spectrum. Therefore, benchmarking between registries implies comparing similar cohorts. Explore patient characteristics in Belgian (B), French (F), German (G) and Dutch (NL) registries (total N=13,122) and determine whether they fulfill predefined diagnostic criteria. Using as case definition sweat chloride >60mmol/L or 2 CFTR mutations identified, CF diagnosis was not documented in 2.8, 5.7, 6.5 and 21.6% of subjects in the F, B, NL, and G registries. Restricting CFTR mutation interpretation to 124 CF causing mutations in CFTR2, these numbers rose to 10.5, 10.4, 14.5 and 24.3% respectively. Excluding these subjects impacted on outcomes. The impact differed between countries; the largest changes seen were a decrease in % adults from 51.9 to 47.8% in G, a decrease in % pancreas sufficiency from 17.0 to 13.0 in F, an increase in % homozygous for F508del from 55.3 to 63.7 in NL and a decrease of % with sweat chloride ≤60mmol/L from 8.4 to 1.1 in B. CF diagnosis is not documented in 10 to 24% of patients included in CF registries. Excluding these patients for analyses leads to significant changes in outcomes. © 2013.

  17. Mexican registry of pediatric cardiac surgery. First report

    Directory of Open Access Journals (Sweden)

    Jorge Cervantes-Salazar

    2014-09-01

    Conclusions: This analysis provides a representative view of the surgical practices in cardiovascular diseases in the pediatric population at the national non-insured population level. However, incorporating other health institutions to the national registry database will render a more accurate panorama of the national reality in surgical practices in the population <18 years of age.

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

    Science.gov (United States)

    Avcin, T; Cimaz, R; Rozman, B

    2009-09-01

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

  19. Toxic Substances Registry System Index of Material Safety Data Sheets

    Science.gov (United States)

    1997-01-01

    The July 1997 revision of the Index of Material Safety Data Sheets (MSDS) for the Kennedy Space Center (KSC) Toxic Substances Registry System (TSRS) is presented. The MSDS lists toxic substances by manufacturer, trade name, stock number, and distributor. The index provides information on hazards, use, and chemical composition of materials stored at KSC.

  20. The European Registry for Patients with Mechanical Circulatory Support (EUROMACS)

    DEFF Research Database (Denmark)

    de By, Theo M M H; Mohacsi, Paul; Gummert, Jan

    2015-01-01

    The European Registry for Patients with Mechanical Circulatory Support (EUROMACS) was founded on 10 December 2009 with the initiative of Roland Hetzer (Deutsches Herzzentrum Berlin, Berlin, Germany) and Jan Gummert (Herz- und Diabeteszentrum Nordrhein-Westfalen, Bad Oeynhausen, Germany) with 15 o...

  1. The International Deep Brain Stimulation Registry and Database for Gilles de la Tourette Syndrome: How Does It Work?

    Science.gov (United States)

    Deeb, Wissam; Rossi, Peter J; Porta, Mauro; Visser-Vandewalle, Veerle; Servello, Domenico; Silburn, Peter; Coyne, Terry; Leckman, James F; Foltynie, Thomas; Hariz, Marwan; Joyce, Eileen M; Zrinzo, Ludvic; Kefalopoulou, Zinovia; Welter, Marie-Laure; Karachi, Carine; Mallet, Luc; Houeto, Jean-Luc; Shahed-Jimenez, Joohi; Meng, Fan-Gang; Klassen, Bryan T; Mogilner, Alon Y; Pourfar, Michael H; Kuhn, Jens; Ackermans, L; Kaido, Takanobu; Temel, Yasin; Gross, Robert E; Walker, Harrison C; Lozano, Andres M; Khandhar, Suketu M; Walter, Benjamin L; Walter, Ellen; Mari, Zoltan; Changizi, Barbara K; Moro, Elena; Baldermann, Juan C; Huys, Daniel; Zauber, S Elizabeth; Schrock, Lauren E; Zhang, Jian-Guo; Hu, Wei; Foote, Kelly D; Rizer, Kyle; Mink, Jonathan W; Woods, Douglas W; Gunduz, Aysegul; Okun, Michael S

    2016-01-01

    Tourette Syndrome (TS) is a neuropsychiatric disease characterized by a combination of motor and vocal tics. Deep brain stimulation (DBS), already widely utilized for Parkinson's disease and other movement disorders, is an emerging therapy for select and severe cases of TS that are resistant to medication and behavioral therapy. Over the last two decades, DBS has been used experimentally to manage severe TS cases. The results of case reports and small case series have been variable but in general positive. The reported interventions have, however, been variable, and there remain non-standardized selection criteria, various brain targets, differences in hardware, as well as variability in the programming parameters utilized. DBS centers perform only a handful of TS DBS cases each year, making large-scale outcomes difficult to study and to interpret. These limitations, coupled with the variable effect of surgery, and the overall small numbers of TS patients with DBS worldwide, have delayed regulatory agency approval (e.g., FDA and equivalent agencies around the world). The Tourette Association of America, in response to the worldwide need for a more organized and collaborative effort, launched an international TS DBS registry and database. The main goal of the project has been to share data, uncover best practices, improve outcomes, and to provide critical information to regulatory agencies. The international registry and database has improved the communication and collaboration among TS DBS centers worldwide. In this paper we will review some of the key operation details for the international TS DBS database and registry.

  2. Developing a provisional and national renal disease registry for Iran

    Directory of Open Access Journals (Sweden)

    Sima Ajami

    2015-01-01

    Full Text Available Background: Disease registry is a database that includes information about people suffering a special kind of disease. The aim of this study was to first identify and compare the National Renal Disease Registry (NRDR characteristics in some countries with Iran; and second, develop a provisional and NRDR for Iran. Materials and Methods: Retrieval of data of the NRDR was performed by scholars responsible in related agencies, including the Ministry of Health and Medical Education, Renal Disease charity, and data registries in the United States, United Kingdom, Malaysia, and Iran. This research was applied, and the study was descriptive-comparative. The study population consisted of the NRDR in selected countries in which data were collected by forms that were designed according to the study objectives. Sources of data were researchers, articles, books, journals, databases, websites, related documents, and people who are active in this regard, and related agencies, including the Ministry of Health and Medical Education, and patient support charity. The researchers collected data for each country based on the study objectives and then put them in comparative tables. Data were analyzed by descriptive, comparative, and theoretical methods. Results: Most of the renal transplant teams report their own results as a single center experiences. America and Britain have a preeminent national registry of renal disease compared to other countries. Conclusion: Given that control, prevention, and treatment of chronic renal diseases incur high expenses and the disease is one of leading mortality factors in Iran and across the world and since national registry system for chronic renal diseases can provide better tools and strategies to manage and evaluate patients′ characteristics as well as risk factors which eventually leads to making better decisions.

  3. Incidence of Appendicitis over Time: A Comparative Analysis of an Administrative Healthcare Database and a Pathology-Proven Appendicitis Registry

    Science.gov (United States)

    Clement, Fiona; Zimmer, Scott; Dixon, Elijah; Ball, Chad G.; Heitman, Steven J.; Swain, Mark; Ghosh, Subrata

    2016-01-01

    Importance At the turn of the 21st century, studies evaluating the change in incidence of appendicitis over time have reported inconsistent findings. Objectives We compared the differences in the incidence of appendicitis derived from a pathology registry versus an administrative database in order to validate coding in administrative databases and establish temporal trends in the incidence of appendicitis. Design We conducted a population-based comparative cohort study to identify all individuals with appendicitis from 2000 to2008. Setting & Participants Two population-based data sources were used to identify cases of appendicitis: 1) a pathology registry (n = 8,822); and 2) a hospital discharge abstract database (n = 10,453). Intervention & Main Outcome The administrative database was compared to the pathology registry for the following a priori analyses: 1) to calculate the positive predictive value (PPV) of administrative codes; 2) to compare the annual incidence of appendicitis; and 3) to assess differences in temporal trends. Temporal trends were assessed using a generalized linear model that assumed a Poisson distribution and reported as an annual percent change (APC) with 95% confidence intervals (CI). Analyses were stratified by perforated and non-perforated appendicitis. Results The administrative database (PPV = 83.0%) overestimated the incidence of appendicitis (100.3 per 100,000) when compared to the pathology registry (84.2 per 100,000). Codes for perforated appendicitis were not reliable (PPV = 52.4%) leading to overestimation in the incidence of perforated appendicitis in the administrative database (34.8 per 100,000) as compared to the pathology registry (19.4 per 100,000). The incidence of appendicitis significantly increased over time in both the administrative database (APC = 2.1%; 95% CI: 1.3, 2.8) and pathology registry (APC = 4.1; 95% CI: 3.1, 5.0). Conclusion & Relevance The administrative database overestimated the incidence of appendicitis

  4. Femoral versus Radial Access in Primary Angioplasty. Analysis of the ACCEPT Registry

    Directory of Open Access Journals (Sweden)

    Pedro Beraldo de Andrade

    2014-07-01

    Full Text Available Background: The radial access provides a lower risk of bleeding and vascular complications related to the puncture site in comparison to the femoral access. Recent studies have suggested a reduction in mortality associated with the radial access in patients with acute myocardial infarction undergoing percutaneous coronary intervention. Objective: To compare the occurrence of adverse cardiovascular ischemic and hemorrhagic events in patients undergoing primary angioplasty according to the type of arterial access route. Methods: From August 2010 to December 2011, 588 patients undergoing primary percutaneous coronary intervention during acute ST-segment elevation myocardial infarction were assessed; they were recruited from 47 centers participating in the ACCEPT registry. Patients were grouped and compared according to the arterial access used for the procedure. Results: The mean age was 61.8 years; 75% were males and 24% had diabetes mellitus. There was no difference between groups as regards the procedure success rate, as well as regards the occurrence of death, reinfarction, or stroke at six months of follow-up. Severe bleeding was reported in 1.1% of the sample analyzed, with no statistical difference related to the access used. Conclusions: The femoral and radial accesses are equally safe and effective for the performance of primary percutaneous coronary intervention. The low rate of cardiovascular events and of hemorrhagic complications reflects the quality of the participating centers and the operators expertise with the use of both techniques.

  5. Femoral versus Radial Access in Primary Angioplasty. Analysis of the ACCEPT Registry

    Energy Technology Data Exchange (ETDEWEB)

    Andrade, Pedro Beraldo de, E-mail: pedroberaldo@cardiol.br; Andrade, Mônica Vieira Athanazio de; Barbosa, Robson Alves; Labrunie, André [Santa Casa de Misericórdia de Marília, São Paulo -SP (Brazil); Hernandes, Mauro Esteves [Santa Casa de Votuporanga, São Paulo -SP (Brazil); Marino, Roberto Luiz [Hospital Madre Teresa, Belo Horizonte -MG (Brazil); Precoma, Dalton Bertolim [Sociedade Hospital Angelina Caron, Campina Grande do Sul -PR (Brazil); Sá, Francisco Carleial Feijó de [Hospital do Coração do Cariri, Barbalha -CE (Brazil); Berwanger, Otávio [Instituto de Ensino e Pesquisa do Hospital do Coração, São Paulo -SP (Brazil); Mattos, Luiz Alberto Piva e [Sociedade Brasileira de Cardiologia, São Paulo -SP (Brazil); Instituto Dante Pazzanese de Cardiologia, São Paulo -SP (Brazil); Unidades de Hemodinâmica e Intervenção Cardiovascular Rede D' Or / São Luiz, São Paulo, SP (Brazil)

    2014-06-15

    The radial access provides a lower risk of bleeding and vascular complications related to the puncture site in comparison to the femoral access. Recent studies have suggested a reduction in mortality associated with the radial access in patients with acute myocardial infarction undergoing percutaneous coronary intervention. To compare the occurrence of adverse cardiovascular ischemic and hemorrhagic events in patients undergoing primary angioplasty according to the type of arterial access route. From August 2010 to December 2011, 588 patients undergoing primary percutaneous coronary intervention during acute ST-segment elevation myocardial infarction were assessed; they were recruited from 47 centers participating in the ACCEPT registry. Patients were grouped and compared according to the arterial access used for the procedure. The mean age was 61.8 years; 75% were males and 24% had diabetes mellitus. There was no difference between groups as regards the procedure success rate, as well as regards the occurrence of death, reinfarction, or stroke at six months of follow-up. Severe bleeding was reported in 1.1% of the sample analyzed, with no statistical difference related to the access used. The femoral and radial accesses are equally safe and effective for the performance of primary percutaneous coronary intervention. The low rate of cardiovascular events and of hemorrhagic complications reflects the quality of the participating centers and the operators expertise with the use of both techniques.

  6. Femoral versus Radial Access in Primary Angioplasty. Analysis of the ACCEPT Registry

    International Nuclear Information System (INIS)

    Andrade, Pedro Beraldo de; Andrade, Mônica Vieira Athanazio de; Barbosa, Robson Alves; Labrunie, André; Hernandes, Mauro Esteves; Marino, Roberto Luiz; Precoma, Dalton Bertolim; Sá, Francisco Carleial Feijó de; Berwanger, Otávio; Mattos, Luiz Alberto Piva e

    2014-01-01

    The radial access provides a lower risk of bleeding and vascular complications related to the puncture site in comparison to the femoral access. Recent studies have suggested a reduction in mortality associated with the radial access in patients with acute myocardial infarction undergoing percutaneous coronary intervention. To compare the occurrence of adverse cardiovascular ischemic and hemorrhagic events in patients undergoing primary angioplasty according to the type of arterial access route. From August 2010 to December 2011, 588 patients undergoing primary percutaneous coronary intervention during acute ST-segment elevation myocardial infarction were assessed; they were recruited from 47 centers participating in the ACCEPT registry. Patients were grouped and compared according to the arterial access used for the procedure. The mean age was 61.8 years; 75% were males and 24% had diabetes mellitus. There was no difference between groups as regards the procedure success rate, as well as regards the occurrence of death, reinfarction, or stroke at six months of follow-up. Severe bleeding was reported in 1.1% of the sample analyzed, with no statistical difference related to the access used. The femoral and radial accesses are equally safe and effective for the performance of primary percutaneous coronary intervention. The low rate of cardiovascular events and of hemorrhagic complications reflects the quality of the participating centers and the operators expertise with the use of both techniques

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

    Science.gov (United States)

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

    2017-12-28

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

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

    Science.gov (United States)

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

    2013-01-01

    Introduction: To support the adoption of guideline concordant care by primary care practices, the New York Diabetes Coalition (NYDC) promoted use of an electronic diabetes registry and developed an interactive educational module on using the registry and improving patient communication. The NYDC hypothesized that use of a registry with immediate…

  9. 75 FR 29350 - Draft Guidance for Industry: Questions and Answers Regarding the Reportable Food Registry as...

    Science.gov (United States)

    2010-05-25

    ...] Draft Guidance for Industry: Questions and Answers Regarding the Reportable Food Registry as Established.... The agency is also seeking comments from industry on the Reportable Food Registry requirements, and... the implementation of the Reportable Food Registry on September 8, 2009, and informs industry about...

  10. 78 FR 33894 - Proposed Information Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment...

    Science.gov (United States)

    2013-06-05

    ... Burn Pit Registry Airborne Hazard Self-Assessment Questionnaire) Activity: Comment Request AGENCY... to ``OMB Control No. 2900-NEW, Open Burn Pit Registry Airborne Hazard Self-Assessment Questionnaire.... Title: Open Burn Pit Registry Airborne Hazard Self-Assessment Questionnaire, VA Form 10-10066. OMB...

  11. 78 FR 54956 - Agency Information Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment...

    Science.gov (United States)

    2013-09-06

    ... Pit Registry Airborne Hazard Self-Assessment Questionnaire) Activities Under OMB Review AGENCY... Burn Pit Registry Airborne Hazard Self-Assessment Questionnaire.'' SUPPLEMENTARY INFORMATION: Title: Open Burn Pit Registry Airborne Hazard Self-Assessment Questionnaire, VA Form 10-10066. Type of Review...

  12. The Euro-VO Registry, Re-engineering the Back-end

    Science.gov (United States)

    Arviset, C.; Perdikeas, M.; Osuna, P.; Gonzalez, J.

    2015-09-01

    The Euro-VO Registry, located, developed and operated at ESAC, is one of the full searchable registries available worldwide, gathering information about all VO-compliant resources. The Euro-VO Registry serves as a registration point for European - and other countries- VO actors and data centres wishing to publish VO services. It harvests other registries to ensure its completeness so VO applications developers and VO users can use it to discover all VO resources, from Europe and from all other VO projects. The Euro-VO Registry provides as well a harvesting interface to other registries in the world to make sure the European VO services are also included in all other worldwide full registries. In particular, the new Euro-VO registry will be supporting the new RegTAP search interface for the relational registry allowing arbitrary ADQL queries against its contents over a compliant TAP service. The recently obsolete (for future developments) SOAP-based legacy search interface will also be supported for backwards compatibility purposes. Furthermore, in the context of the IVOA, some quality control and curation procedures for the registry resources are being defined. The Euro-VO Registry implements these procedures to ensure the high quality of the VO resources it references. This paper gives an overview of the recent development of the new Euro-VO Registry, together with its new curation facilities, both of which are being performed under a contract awarded to Neuropublic, under ESA special initiative to Greece.

  13. A Review of Current Fixation Use and Registry Outcomes in Total Hip Arthroplasty

    DEFF Research Database (Denmark)

    Troelsen, Anders; Malchau, Erik; Sillesen, Nanna Hylleholt

    2013-01-01

    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...

  14. The use of databases and registries to enhance colonoscopy quality.

    Science.gov (United States)

    Logan, Judith R; Lieberman, David A

    2010-10-01

    Administrative databases, registries, and clinical databases are designed for different purposes and therefore have different advantages and disadvantages in providing data for enhancing quality. Administrative databases provide the advantages of size, availability, and generalizability, but are subject to constraints inherent in the coding systems used and from data collection methods optimized for billing. Registries are designed for research and quality reporting but require significant investment from participants for secondary data collection and quality control. Electronic health records contain all of the data needed for quality research and measurement, but that data is too often locked in narrative text and unavailable for analysis. National mandates for electronic health record implementation and functionality will likely change this landscape in the near future. Copyright © 2010 Elsevier Inc. All rights reserved.

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

    DEFF Research Database (Denmark)

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

    2017-01-01

    , to provide new hope for children, parents and medical professionals fighting DIPG. In a first step towards collaboration, in 2011, a network of biologists and clinicians working in the field of DIPG was established within the European Society for Paediatric Oncology (SIOPE) Brain Tumour Group: the SIOPE DIPG...... was developed, The SIOPE DIPG Registry and Imaging Repository, to centrally collect data of DIPG patients. As for April 2016, clinical data as well as MR-scans of 694 patients have been entered into the SIOPE DIPG Registry/Imaging Repository. The median progression free survival is 6.0 months (95% Confidence...... research into DIPG. This is seen as an essential first step towards understanding the disease, improving care and (ultimately) cure for children with DIPG....

  16. Registry Evaluation of Digital Ulcers in Systemic Sclerosis

    Directory of Open Access Journals (Sweden)

    Felice Galluccio

    2010-01-01

    Full Text Available Digital ulcers are a very frequent complication of systemic sclerosis affecting about half of the SSc patients, and about 75% of the affected patients have their first DU episode within 5 years from their first non-Raynaud symptom. The lack of adequate classification criteria as well as the lack of knowledge of the development of DU have contributed to the opening of specific registries to better understand the natural history of these lesions. For these reason, specific disease registries play a fundamental role in this field of research. Thanks to the systematic collection of data and their subsequent analysis and comparison between different cohorts, it is possible to improve understanding of the underlying trigger mechanisms of DU development and to determine temporal trends. In the future, the development of recommendations for the management of DU remains of pivotal importance to prevent DU development and obtain rapid healing as well as reduction of pain and disability.

  17. Canadian home parenteral nutrition (HPN) registry: validation and patient outcomes.

    Science.gov (United States)

    Fernandes, G; Kaila, B; Jeejeebhoy, K N; Gramlich, L; Armstrong, D; Allard, J P

    2012-07-01

    In Canada, there are an estimated 400 home parenteral nutrition (HPN) patients. In 2006, a registry was created to gather patient outcome information. The aim of this study was to validate the registry and report on HPN patient outcomes. Several demographic, clinical parameters were collected. For the validation, paired t test and intraclass correlation coefficient (ICC) were used to assess agreement between repeat entries. For the outcome report, paired t test was used to assess changes, and survival analysis was performed using the Kaplan-Meier method. Results are expressed as mean ± SEM. On validation, there was high correlation/agreement (P calories (P = .001) and proteins (P good nutrition status while PN is reduced but do have a reduced quality of life.

  18. Toxic Substances Registry System. Index of Material Safety Data Sheets

    Science.gov (United States)

    1994-01-01

    The October 1994 revision of the KSC Toxic Substances Registry System (TSRS) Material Safety Data Sheets (MSD's) is presented. The listed MSD's which were submitted to the TSRS are maintained by the Base Operations Contractors of the Biomedical Operations and Research Office of KSC. The purpose of the index is to provide a means of accessing information on the hazards associated with the toxic and otherwise hazardous chemicals stored and used at KSC. Indices are provided for manufacturers, trademarks, and stock numbers.

  19. OCLC Registry of Digital Masters – Opportunities for European Cooperation

    OpenAIRE

    Janet Lees

    2005-01-01

    I would like to thank the Preservation Division for the invitation to participate in the programme today. I would also like to thank the LIBER Board for their interest in the early stages of this project culminating in the announcement LIBER President Erland Kolding Nielsen made last night about LIBER support and collaboration with OCLC PICA with respect to the Digital Registry. This initiative reflects my new role within OCLC PICA, which is to identify opportunities for joint development wit...

  20. Pleural Mesothelioma Surveillance: Validity of Cases from a Tumour Registry

    Directory of Open Access Journals (Sweden)

    France Labrèche

    2012-01-01

    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.

  1. Generalizability of EXCEL and NOBLE results to a large registry population with unprotected left main coronary artery disease.

    Science.gov (United States)

    Lee, Pil Hyung; Kang, Se Hun; Han, Seungbong; Ahn, Jung-Min; Bae, Jae Seok; Lee, Cheol Hyun; Kang, Soo-Jin; Lee, Seung-Whan; Kim, Young-Hak; Lee, Cheol Whan; Park, Seong-Wook; Park, Duk-Woo; Park, Seung-Jung

    2017-12-01

    The aim of this study was to determine how trial-based findings of EXCEL and NOBLE might be interpreted and generalizable in 'real-world' settings with comparison of data from the large-scaled, all-comer Interventional Research Incorporation Society-Left MAIN Revascularization (IRIS-MAIN) registry. We compared baseline clinical and procedural characteristics and also determined how the relative treatment effect of percutaneous coronary intervention (PCI) and coronary artery bypass grafting (CABG) was different in EXCEL and NOBLE, compared with those of the multicenter, IRIS-MAIN registry (n=2481). The primary outcome for between-study comparison was a composite of death, myocardial infarction (MI), or stroke. There were between-study differences in patient risk profiles (age, BMI, diabetes, and clinical presentation), lesion complexities, and procedural characteristics (stent type, the use of off-pump surgery, and radial artery); the proportion of diabetes and acute coronary syndrome was particularly lower in NOBLE than in other studies. Although there was interstudy heterogeneity for the protocol definition of MI, the risks for serious composite outcome of death, MI, or stroke were similar between PCI and CABG in EXCEL [hazard ratio (HR): 1.00; 95% confidence interval (CI): 0.79-1.26; P=0.98] and in the matched cohort of IRIS-MAIN (HR: 1.08; 95%CI: 0.85-1.38; P=0.53), whereas it was significantly higher after PCI than after CABG in NOBLE (HR: 1.47; 95%CI: 1.06-2.05; P=0.02), which was driven by more common MI and stroke after PCI. In the comparison of a large-sized, all-comer registry, the EXCEL trial might represent better generalizability with respect to baseline characteristics and observed clinical outcomes compared with the NOBLE trial.

  2. Positive and negative effects of IT on cancer registries.

    Science.gov (United States)

    Mohammadzadeh, Niloofar; Safdari, Reza; Rahimi, Azin

    2013-01-01

    In the new millennium people are facing serious challenges in health care, especially with increasing non- communicable diseases (NCD). One of the most common NCDs is cancer which is the leading cause of death in developed countries and in developing countries is the second cause of death after heart diseases. Cancer registry can make possible the analysis, comparison and development of national and international cancer strategies and planning. Information technology has a vital role in quality improvement and facility of cancer registries. With the use of IT, in addition to gaining general benefits such as monitoring rates of cancer incidence and identifying planning priorities we can also gain specific advantages such as collecting information for a lifetime, creating tele medical records, possibility of access to information by patient, patient empowerment, and decreasing medical errors. In spite of the powerful role of IT, we confront various challenges such as general problems, like privacy of the patient, and specific problems, including possibility of violating patients rights through misrepresentation, omission of human relationships, and decrease in face to face communication between doctors and patients. By implementing appropriate strategies, such as identifying authentication levels, controlling approaches, coding data, and considering technical and content standards, we can optimize the use of IT. The aim of this paper is to emphasize the need for identifying positive and negative effects of modern IT on cancer registry in general and specific aspects as an approach to cancer care management.

  3. Rare disease registries classification and characterization: a data mining approach.

    Science.gov (United States)

    Santoro, Michele; Coi, Alessio; Lipucci Di Paola, Michele; Bianucci, Anna Maria; Gainotti, Sabina; Mollo, Emanuela; Taruscio, Domenica; Vittozzi, Luciano; Bianchi, Fabrizio

    2015-01-01

    The European Commission and Patients Organizations identify rare disease registries (RDRs) as strategic instruments to develop research and improve knowledge in the field of rare diseases. Interoperability between RDRs is needed for research activities, validation of therapeutic treatments, and public health actions. Sharing and comparing information requires a uniform and standardized way of data collection, so levels of interconnection between RDRs with similar aims and/or nature of data should be identified. The objective of this study is to define a classification and characterization of RDRs in order to identify different profiles and informative needs. Exploratory statistical analyses (cluster analysis and random forest) were applied to data derived from the EPIRARE project ('Building Consensus and Synergies for the EU Rare Disease Patient Registration') survey on the activities and needs of RDRs. The cluster analysis identified 3 main typologies of RDRs: public health, clinical and genetic research, and treatment registries. The analysis of the most informative variables, identified by the random forest method, led to the characterization of 3 types of RDRs and the definition of different profiles and informative needs. These results represent a useful source of information to facilitate the harmonization and interconnection of RDRs in accordance with the different profiles identified. It could help sharing the information between RDRs with similar profiles and, whenever possible, interconnections between registries with different profiles. © 2015 S. Karger AG, Basel.

  4. [Creation and report of the Tunisian Fanconi Anemia Registry (TFAR)].

    Science.gov (United States)

    Hadiji Mseddi, S; Kammoun, L; Bellaaj, H; Ben Youssef, Y; Aissaoui, L; Torjemane, L; Telmoudi, F; Amouri, A; Elghezal, H; Ouederni, M; Ben Abdennebi, Y; Hammemi, S; Ben Othmen, T; Ben Abid, H; Bejaoui, M; Abdelhak, S; Hachicha, M; Dellagi, K; Frikha, M

    2012-05-01

    Fanconi anemia (FA) is a genetically and phenotypically heterogeneous inherited disease. Many groups have established FA registries. In Tunisia, in collaboration with the Tunisian Fanconi Anemia Study Group (TFASG), we set up the Tunisian Fanconi Anemia Registry (TFAR). We contacted all hematology and pediatrics departments to include their FA patients diagnosed between January 1983 and December 2008. The registry is available on the TFASG web site (www.fanconi-tunisie.net). Sorting the files brought out 142 patients belonging to 118 families. The mean age at diagnosis was 11 years. There was consanguinity in 86%, malformative syndrome in 91%, and pancytopenia at diagnosis in 69%. Of 28 patients, 95% belonged to the FANCA group. Androgen treatment was given in 109 cases and genoidentical bone marrow transplantation (BMT) in 27 patients. The diagnosis of a myelodysplastic syndrome was retained in 4%, acute leukemia in 6%, and a solid tumor in 2%. The median overall survival time in all patients is 17 years 5 months; it is significantly better in patients having received allografts (p=0.01). FA seems frequent in Tunisia, which is in part explained by the high consanguinity and endogamy in this country. Hematologic impairment is still the most frequent revealing circumstance of the disease. It is often severe or moderate and requires androgen treatment or bone marrow transplantation. BMT should be proposed to all patients with an HLA-compatible donor. Copyright © 2012 Elsevier Masson SAS. All rights reserved.

  5. Saving lives branch by branch: the effectiveness of driver licensing bureau campaigns to promote organ donor registry sign-ups to African Americans in Michigan.

    Science.gov (United States)

    Harrison, Tyler R; Morgan, Susan E; King, Andy J; Williams, Elizabeth A

    2011-09-01

    African Americans are disproportionately represented on the national waiting list for organ transplantation. Promoting organ donor registries is one way to improve the possibility that those on the waiting list can receive a life saving transplant. Driver licensing bureaus have been suggested as an efficient site for campaigns aimed at increasing state-based registry sign-ups. Previous research has suggested these campaigns work well for Caucasian populations, but there is less evidence supporting this approach in more diverse populations. To determine whether more diverse populations demonstrate similar sign-up rates when receiving a driver licensing bureau campaign, the present study used a previously successful strategy as the basis for designing and disseminating materials that would appeal to African Americans and Caucasians in two diverse counties in the state of Michigan (Wayne and Oakland Counties). Communication design and media priming served as the theoretical foundations of a three-prong campaign that used mass media, point-of-decision, and interpersonal components. Results from countywide and zip code data indicate that the campaign greatly increased sign-ups among African American residents (700% increase above baseline). Although more Caucasians still signed up than did African Americans, the inclusion of an interpersonal component resulted in similar numbers of registry sign-ups during 2 intervention months. The study provides evidence supporting the use of driver licensing bureau campaigns to promote organ donation registries to diverse audiences. Copyright © Taylor & Francis Group, LLC

  6. Inadequate description of educational interventions in ongoing randomized controlled trials

    Directory of Open Access Journals (Sweden)

    Pino Cécile

    2012-05-01

    Full Text Available Abstract Background The registration of clinical trials has been promoted to prevent publication bias and increase research transparency. Despite general agreement about the minimum amount of information needed for trial registration, we lack clear guidance on descriptions of non-pharmacologic interventions in trial registries. We aimed to evaluate the quality of registry descriptions of non-pharmacologic interventions assessed in ongoing randomized controlled trials (RCTs of patient education. Methods On 6 May 2009, we searched for all ongoing RCTs registered in the 10 trial registries accessible through the World Health Organization International Clinical Trials Registry Platform. We included trials evaluating an educational intervention (that is, designed to teach or train patients about their own health and dedicated to participants, their family members or home caregivers. We used a standardized data extraction form to collect data related to the description of the experimental intervention, the centers, and the caregivers. Results We selected 268 of 642 potentially eligible studies and appraised a random sample of 150 records. All selected trials were registered in 4 registers, mainly ClinicalTrials.gov (61%. The median [interquartile range] target sample size was 205 [100 to 400] patients. The comparator was mainly usual care (47% or active treatment (47%. A minority of records (17%, 95% CI 11 to 23% reported an overall adequate description of the intervention (that is, description that reported the content, mode of delivery, number, frequency, duration of sessions and overall duration of the intervention. Further, for most reports (59%, important information about the content of the intervention was missing. The description of the mode of delivery of the intervention was reported for 52% of studies, the number of sessions for 74%, the frequency of sessions for 58%, the duration of each session for 45% and the overall duration for 63

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

    Science.gov (United States)

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

    2016-12-01

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

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

    Science.gov (United States)

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

    2018-01-01

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

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

    Science.gov (United States)

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

    2018-03-30

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

  10. Rationale, design, and baseline characteristics of the CLARIFY registry of outpatients with stable coronary artery disease.

    Science.gov (United States)

    Sorbets, Emmanuel; Greenlaw, Nicola; Ferrari, Roberto; Ford, Ian; Fox, Kim M; Tardif, Jean-Claude; Tendera, Michal; Steg, Philippe Gabriel

    2017-10-01

    Despite major advances in prevention and treatment, coronary artery disease (CAD) remains the leading cause of death worldwide. Whereas many sources of data are available on the epidemiology of acute coronary syndromes, fewer datasets reflect the contemporary management and outcomes of stable CAD patients. A worldwide contemporary registry would improve our knowledge about stable CAD. The main objectives are to describe the demographics, clinical profile, contemporary management and outcomes of outpatients with stable CAD; to identify gaps between evidence and treatment; and to investigate long-term prognostic determinants. CLARIFY (ProspeCtive observational LongitudinAl RegIstry oF patients with stable coronary arterY disease) is an ongoing international observational longitudinal registry. Stable CAD patients from 45 countries in Europe, Asia, America, Middle East, Australia and Africa were enrolled between November 2009 and June 2010. The inclusion criteria were previous myocardial infarction, evidence of coronary stenosis >50%, proven symptomatic myocardial ischemia or prior revascularization procedure. The main exclusion criteria were serious non-cardiovascular disease, conditions interfering with life expectancy or severe other cardiovascular disease (including advanced heart failure). Follow-up visits were planned annually for up to 5 years, interspersed with 6-month telephone calls. Of the 32,703 patients enrolled, most (77.6%) were male, age (mean ± SD) was 64.2 ± 10.5 years, and 71.0% were receiving treatment for hypertension; mean ± SD resting heart rate was 68.2 ± 10.6 bpm. Patients were enrolled based on a history of myocardial infarction >3 months earlier (57.7%), having at least one stenosis >50% on coronary angiography (61.1%), proven symptomatic myocardial ischemia on non-invasive testing (23.1%), or history of percutaneous coronary intervention or coronary artery bypass graft (69.8%). Baseline characteristics were similar across the four

  11. EURO-WABB: an EU rare diseases registry for Wolfram syndrome, Alström syndrome and Bardet-Biedl syndrome.

    Science.gov (United States)

    Farmer, Amy; Aymé, Ségolène; de Heredia, Miguel Lopez; Maffei, Pietro; McCafferty, Susan; Młynarski, Wojciech; Nunes, Virginia; Parkinson, Kay; Paquis-Flucklinger, Véronique; Rohayem, Julia; Sinnott, Richard; Tillmann, Vallo; Tranebjaerg, Lisbeth; Barrett, Timothy G

    2013-08-27

    Wolfram, Alström and Bardet-Biedl (WABB) syndromes are rare diseases with overlapping features of multiple sensory and metabolic impairments, including diabetes mellitus, which have caused diagnostic confusion. There are as yet no specific treatments available, little or no access to well characterized cohorts of patients, and limited information on the natural history of the diseases. We aim to establish a Europe-wide registry for these diseases to inform patient care and research. EURO-WABB is an international multicenter large-scale observational study capturing longitudinal clinical and outcome data for patients with WABB diagnoses. Three hundred participants will be recruited over 3 years from different sites throughout Europe. Comprehensive clinical, genetic and patient experience data will be collated into an anonymized disease registry. Data collection will be web-based, and forms part of the project's Virtual Research and Information Environment (VRIE). Participants who haven't undergone genetic diagnostic testing for their condition will be able to do so via the project. The registry data will be used to increase the understanding of the natural history of WABB diseases, to serve as an evidence base for clinical management, and to aid the identification of opportunities for intervention to stop or delay the progress of the disease. The detailed clinical characterisation will allow inclusion of patients into studies of novel treatment interventions, including targeted interventions in small scale open label studies; and enrolment into multi-national clinical trials. The registry will also support wider access to genetic testing, and encourage international collaborations for patient benefit.

  12. [National Registry of Acute Ischemic Coronary Syndromes (RENASICA). Mexican Cardiology Society. The RENASICA Cooperative Group].

    Science.gov (United States)

    Lupi Herrera, Eulo

    2002-01-01

    This study assessed current practices in relation to coronary risk factors, therapy and its results in patients with acute ischemic coronary syndromes (AICS) with or without ST-segment-elevation myocardial infarction [MI], from data collected in the National Registry of AICS [RENASICA] in México; Eigh teen hospitals [2nd. and 3rd level of medical attention] recruited patients for the registry, 4,253 patients were enrolled, 2,773 [65.2%] without AICSST segment elevation and 1480 [34.8%] patients with ST segment elevation MI. Chest pain was the main cause for seeking medical attention to an emergency service (90.5%) and 50% of the patients referred it in advance. AICS was mainly observed in men in their sixth decade of age. Age, ST segment depression [> 2 mm], CKMB [> 2 values above normal] and the extension of the coronary artery disease allow to predict mortality and the combination of mortality and myocardial infarction. Only 50.4% of the eligible patients with AICS and ST-segment-elevation myocardial infarction received thrombolytic therapy. Of the eligible cohort of AICS only 58% patients could an hemodynamic study be performed. In 55% of them, a percutaneous coronary intervention procedure was done (PTCA-Stent implantation). Aspirin [ASA] and heparin were prescribed in 70% of the patients at entry to the ward and the same percentage of AICS patients received ASA after discharge. Low molecular weight heparin and IIb/IIIa receptor platelet antagonists were used in a low proportion of patients. RENASICA provides information related to AICS patients that could help the mexican health authorities to apply better the health resources in the forthcoming future for the treatment of AICS.

  13. Grape Seed Procyanidins in Pre- and Mild Hypertension: A Registry Study

    Directory of Open Access Journals (Sweden)

    Gianni Belcaro

    2013-01-01

    Full Text Available The efficacy of a standardized grape seed procyanidins extract (GSPE, Enovita to decrease blood pressure when associated with nondrug intervention (diet and lifestyle modifications was investigated in a controlled registry study involving 119 healthy, pre- and mildly hypertensive subjects. Two dosages of Enovita were evaluated (150 and 300 mg/die, using blood pressure and heart rate as the primary endpoints and complementing these observations with a laser Doppler flowmetry (LDF investigation of the microcirculation state and an evaluation of the plasma oxidative status. After four months of treatment, a statistically significant higher, and dose-dependent, improvement in all endpoints was observed in the treatment groups compared to that of the control, with blood pressure normalizing in 93% of the higher dosage (300 mg treatment group. Taken together, these observations suggest that GSPEs have beneficial cardiovascular effects that complement current intervention strategies in the hypertension area. The effect on blood pressure adds to the beneficial effects of GSPEs on the cardiovascular disease (CVD phenotype associated with the oxidation of membrane lipids (endothelial dysfunction, formation of oxidized LDL, and activation of phagocytic cells.

  14. Connect MDS/AML: design of the myelodysplastic syndromes and acute myeloid leukemia disease registry, a prospective observational cohort study.

    Science.gov (United States)

    Steensma, David P; Abedi, Medrdad; Bejar, Rafael; Cogle, Christopher R; Foucar, Kathryn; Garcia-Manero, Guillermo; George, Tracy I; Grinblatt, David; Komrokji, Rami; Ma, Xiaomei; Maciejewski, Jaroslaw; Pollyea, Daniel A; Savona, Michael R; Scott, Bart; Sekeres, Mikkael A; Thompson, Michael A; Swern, Arlene S; Nifenecker, Melissa; Sugrue, Mary M; Erba, Harry

    2016-08-19

    Registry will be the first prospective, observational, non-interventional study in the United States to collect clinical information, patient-reported outcomes, and tissue samples from patients with MDS, ICUS, or AML receiving multiple therapies. Results from this registry may provide new insights into the relationship between diagnostic practices, treatment regimens, and outcomes in patients with these diseases and identify areas for future investigation. Connect MDS/AML Disease Registry ( NCT01688011 ). Registered 14 September 2012.

  15. The cost of doing business: cost structure of electronic immunization registries.

    Science.gov (United States)

    Fontanesi, John M; Flesher, Don S; De Guire, Michelle; Lieberthal, Allan; Holcomb, Kathy

    2002-10-01

    To predict the true cost of developing and maintaining an electronic immunization registry, and to set the framework for developing future cost-effective and cost-benefit analysis. Primary data collected at three immunization registries located in California, accounting for 90 percent of all immunization records in registries in the state during the study period. A parametric cost analysis compared registry development and maintenance expenditures to registry performance requirements. Data were collected at each registry through interviews, reviews of expenditure records, technical accomplishments development schedules, and immunization coverage rates. The cost of building immunization registries is predictable and independent of the hardware/software combination employed. The effort requires four man-years of technical effort or approximately $250,000 in 1998 dollars. Costs for maintaining a registry were approximately $5,100 per end user per three-year period. There is a predictable cost structure for both developing and maintaining immunization registries. The cost structure can be used as a framework for examining the cost-effectiveness and cost-benefits of registries. The greatest factor effecting improvement in coverage rates was ongoing, user-based administrative investment.

  16. LOCALIZATION AND THE ELEMENTS OF THE SEVENTEENTH-CENTURY SOCIAL LIFE IN SÂBIT’S DIVAN SÂBİT DİVANI’NDA MAHALLÎLEŞME VE 17. YÜZYIL SOSYAL HAYAT UNSURLARI

    Directory of Open Access Journals (Sweden)

    Yunus KAPLAN

    2009-08-01

    Full Text Available Throughout the history, artists created their art using the elements of their society such as customs, traditions, commodities, words and lifestyles. Like other artists, our divan poets were inspired by their society, and in their poetry they used plenty of the accepted materialistic and moral values of the society. Sabit, a poet who lived in the second-half of the seventeenth century, was no exception. He decorated his poems with various dreams, and his careful observations and analyses of daily life were masterfully reflected in his poetry.This study classifies the elements reflecting the social life of the seventeenth century in Sabit’s poems. The relevant examples from Sabit’s Divan are also given. Tarihin her devrinde sanatkârlar, sanat eserlerini oluştururken mensup oldukları toplumun sosyal hayat tarzına ait yaşayış şekli, âdet ve gelenekler, kullanılan eşyalar ve kelimeler gibi birçok unsuru kullanarak eserlerine şekil vermişlerdir. Divan şairlerimiz de diğer sanatkârlar gibi eserlerini kaleme alırken, içinde yaşadıkları toplumun sosyal hayatından ilham almışlar, günlük hayatta kabul gören maddî ve manevî kültürel değerleri şiirlerde bolca kullanmışlardır. 17. yüzyılın ikinci yarısında yetişen Sâbit de yaşadığı döneme dair, iyi bir gözlem ve tahlil yaparak günlük hayata kayıtsız kalmamış, bu gözlem ve tahlillerini değişik hayallerle süsleyerek şiirlerine ustaca yansıtmasını başarmıştır. Bu çalışmada, Sâbit’in şiirlerinde 17. yüzyıldaki sosyal hayatı yansıtan unsurlar, çeşitli başlıklar altında sınıflandırılarak bunlara Divan’ından örnekler verilecektir.

  17. Interventional neuroradiology

    International Nuclear Information System (INIS)

    Mehta, B.A.; Quint, D.J.; Sanders, W.P.; Patel, S.C.; Boulos, R.S.; Burke, T.H.

    1987-01-01

    This presentation reviews the authors' angiographic approach to interventional cases and demonstrates examples of procedures we have performed including preoperative embolizations (dural, arteriovenous malformations, meningioma, juvenile angiofibroma, gliosarcoma, glomus tympanicum, hemangiopericytoma, and spinal hemangioma), therapeutic interventions (balloon occlusion of cavernous-carotid and vertebral fistulas, intracranial and extracranial aneurysms, and angioplasty of vertebral, external carotid, and subclavian arteries), and pain management (alcohol injection of spine metastases). Potential and actual complications are reviewed

  18. Report of incidence and mortality in China cancer registries, 2009

    Science.gov (United States)

    Zheng, Rongshou; Zhang, Siwei; Zhao, Ping; Li, Guanglin; Wu, Lingyou; He, Jie

    2013-01-01

    Objective The National Central Cancer Registry (NCCR) collected cancer registration data in 2009 from local cancer registries in 2012, and analyzed to describe cancer incidence and mortality in China. Methods On basis of the criteria of data quality from NCCR, data submitted from 104 registries were checked and evaluated. There were 72 registries’ data qualified and accepted for cancer registry annual report in 2012. Descriptive analysis included incidence and mortality stratified by area (urban/rural), sex, age group and cancer site. The top 10 common cancers in different groups, proportion and cumulative rates were also calculated. Chinese population census in 1982 and Segi’s population were used for age-standardized incidence/mortality rates. Results All 72 cancer registries covered a total of 85,470,522 population (57,489,009 in urban and 27,981,513 in rural areas). The total new cancer incident cases and cancer deaths were 244,366 and 154,310, respectively. The morphology verified cases accounted for 67.23%, and 3.14% of incident cases only had information from death certifications. The crude incidence rate in Chinese cancer registration areas was 285.91/100,000 (males 317.97/100,000, females 253.09/100,000), age-standardized incidence rates by Chinese standard population (ASIRC) and by world standard population (ASIRW) were 146.87/100,000 and 191.72/100,000 with the cumulative incidence rate (0-74 age years old) of 22.08%. The cancer incidence and ASIRC were 303.39/100,000 and 150.31/100,000 in urban areas whereas in rural areas, they were 249.98/100,000 and 139.68/100,000, respectively. The cancer mortality in Chinese cancer registration areas was 180.54/100,000 (224.20/100,000 in males and 135.85/100,000 in females), age-standardized mortality rates by Chinese standard population (ASMRC) and by world standard population (ASMRW) were 85.06/100,000 and 115.65/100,000, and the cumulative incidence rate (0-74 age years old) was 12.94%. The cancer mortality

  19. Toward evidence-based diagnosis of myocarditis in children and adolescents: Rationale, design, and first baseline data of MYKKE, a multicenter registry and study platform.

    Science.gov (United States)

    Messroghli, Daniel R; Pickardt, Thomas; Fischer, Marcus; Opgen-Rhein, Bernd; Papakostas, Konstantin; Böcker, Dorothée; Jakob, André; Khalil, Markus; Mueller, Goetz C; Schmidt, Florian; Kaestner, Michael; Udink Ten Cate, Floris E A; Wagner, Robert; Ruf, Bettina; Kiski, Daniela; Wiegand, Gesa; Degener, Franziska; Bauer, Ulrike M M; Friede, Tim; Schubert, Stephan

    2017-05-01

    The aim of this registry is to provide data on age-related clinical features of suspected myocarditis and to create a study platform allowing for deriving diagnostic criteria and, at a later stage, testing therapeutic interventions in patients with myocarditis. After an initial 6-month pilot phase, MYKKE was opened in June 2014 as a prospective multicenter registry for patients from pediatric heart centers, university hospitals, and community hospitals with pediatric cardiology wards in Germany. Inclusion criteria consisted of ageleading diagnosis at the discretion of the treating physician. By December 31, 2015, fifteen centers across Germany were actively participating and had enrolled 149 patients. Baseline data reveal 2 age peaks (12 years), show higher proportions of males, and document a high prevalence of severe disease courses in pediatric patients with suspected myocarditis. Severe clinical courses and early adverse events were more prevalent in younger patients and were related to severely impaired leftventricular ejection fraction at initial presentation. MYKKE represents a multicenter registry and research platform for children and adolescents with suspected myocarditis that achieve steady recruitment and generate a wide range of real-world data on clinical course, diagnostic workup, and treatment of this group of patients. The baseline data reveal the presence of 2 age peaks and provide important insights into the severity of disease in children with suspected myocarditis. In the future, MYKKE might facilitate interventional substudies by providing an established collaborating network using common diagnostic approaches. Copyright © 2017 Elsevier Inc. All rights reserved.

  20. Analyses of the Turkish National Intravenous Thrombolysis Registry.

    Science.gov (United States)

    Kutluk, Kursad; Kaya, Dilaver; Afsar, Nazire; Arsava, Ethem Murat; Ozturk, Vesile; Uzuner, Nevzat; Giray, Semih; Topcuoglu, Mehmet Akif; Gungor, Levent; Sirin, Hadiye; Yaka, Erdem; Ozdemir, Ozcan; Dalkara, Turgay

    2016-05-01

    The relatively late approval of use of recombinant tissue plasminogen activator (rt-PA) for acute ischemic stroke in Turkey has resulted in obvious underuse of this treatment. Here we present the analyses of the nationwide registry, which was created to prompt wider use of intravenous thrombolysis, as well as to monitor safe implementation of the treatment in our country. Patients were registered prospectively in our database between 2006 and 2013. Admission and 24-hour National Institutes of Health Stroke Scale and 3-month modified Rankin Scale scores were recorded. A "high-volume center" was defined as a center treating 10 or more patients with rt-PA per year. A total of 1133 patients were enrolled into the registry by 38 centers in 18 cities. A nearly 4-fold increase in the study population and in the number of participating centers was observed over the 6 years of the study. The mean baseline NIHSS score was 14.5 ± 5.7, and the prevalence of symptomatic hemorrhage was 4.9%. Mortality at 3 months decreased from 22% to 11% in the 6 years of enrollment, and 65% of cases were functionally independent. Age older than 70 years, an NIHSS score higher than 14 upon hospital admission, and intracranial hemorrhage were independently associated with mortality, and being treated in a high-volume center was related to good outcome. We observed a decreasing trend in mortality and an acceptable prevalence of symptomatic hemorrhage over 6 years with continuous addition of new centers to the registry. The first results of this prospective study are encouraging and will stimulate our efforts at increasing the use of intravenous thrombolysis in Turkey. Copyright © 2016 National Stroke Association. Published by Elsevier Inc. All rights reserved.

  1. [Twelve years of working of Brazzaville cancer registry].

    Science.gov (United States)

    Nsondé Malanda, Judith; Nkoua Mbon, Jean Bernard; Bambara, Augustin Tozoula; Ibara, Gérard; Minga, Benoît; Nkoua Epala, Brice; Gombé Mbalawa, Charles

    2013-02-01

    The Brazzaville cancer registry was created in 1996 with the support of the International Agency Research against Cancer (IARC) which is located in Lyon, France. The Brazzaville cancer registry is a registry which is based on population which records new cancer cases occurring in Brazzaville by using Canreg 4.0 Software. Its aim is to supply useful information to fight against cancer to physicians and to decision makers. We conducted this study whose target was to determine the incidence of cancer in Brazzaville during twelve years, from January 1st, 1998 to December 31, 2009. During that period 6,048 new cancer cases were recorded: 3,377 women (55.8%), 2,384 men (39.4%), and 287 children (4.8%) from 0 to 14 years old with an annual average of 504 cases. Middle age to the patient's diagnosis was 49.5 years in female sex and 505.5 years old for male sex. The incidence rate of cancers in Brazzaville was 39.8 or 100.000 inhabitants per year and by sex we observed 49 to female sex and 35.2 for male sex. The first cancers localizations observed to women were in order of frequency: breast, cervix uterine, liver ovaries, hematopoietic system, to men : liver, prostate, hematopoietic system, colon and stomach; to children : retina, kidney, hematopoietic system, liver and bones. These rates are the basis to know the burden of cancer among all pathologies of Brazzaville and the achievement of a national cancer control program.

  2. Epidemiology and management of cardiac arrest: what registries are revealing.

    Science.gov (United States)

    Gräsner, Jan-Thorsten; Bossaert, Leo

    2013-09-01

    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

  3. Clinical registry for rheumatoid arthritis; a preliminary analysis

    International Nuclear Information System (INIS)

    Fakhr, A.; Hakim, F.; Zaidi, S.K.; Sharif, A.

    2017-01-01

    To establish a clinical registry for Rheumatoid Arthritis and delineate the most common symptoms that rheumatoid arthritis (RA) patients experience in our set up. Study Design: Cross sectional study. Place and Duration of Study: Study was carried out at Military Hospital (MH) Rawalpindi at Rheumatology Department during the period of Jan 2013 to Jun 2015. Material and Methods: A clinical registry for Rheumatoid Arthritis was developed as per criteria jointly developed by American College of Rheumatology (ACR) along with European League against Rheumatism (EULAR) (2010). Fifty-eight patients were registered after their informed consent and approval by Military Hospital (MH) Rawalpindi ethical committee. Age, gender and relevant clinical parameters of RA patients were recorded on case report forms and stored for analysis in the RA registry in Excel 2010. The figures were reported in frequencies and percentages. Results: Multiple joint pains (48.28%), fever (24.14%), morning stiffness of joints (22.41%) were the most common symptoms in RA patients. Other clinical manifestations included painful bilateral swollen joints (13.79%), pain in different parts of the body (10.34%), Raynaud's phenomenon (10.34%), malaise (8.62%), swollen body parts (8.62%), ulcers (8.62%), fatigue (6.90%), nodules on skin/elbow/interphalangeal joints (6.90%), deformities of fingers/ hand (3.45%), redness of eyes (3.45%), body rash (3.45%), inability to walk (3.45%), cervical lymphadenopathy (1.72%), stiffness of spine (1.72%) and myalgias (1.72%). Conclusion: It is concluded that multiple joint pains, fever and morning stiffness of joints are the most common symptoms of RA patients. (author)

  4. Central venous catheter infections in home parenteral nutrition patients: Outcomes from Sustain: American Society for Parenteral and Enteral Nutrition's National Patient Registry for Nutrition Care.

    Science.gov (United States)

    Ross, Vicki M; Guenter, Peggi; Corrigan, Mandy L; Kovacevich, Debra; Winkler, Marion F; Resnick, Helaine E; Norris, Tina L; Robinson, Lawrence; Steiger, Ezra

    2016-12-01

    Home parenteral nutrition (HPN) is a high-cost, complex nutrition support therapy that requires the use of central venous catheters. Central line-associated bloodstream infections (CLABSIs) are among the most serious risks of this therapy. Sustain: American Society for Parenteral and Enteral Nutrition's National Patient Registry for Nutrition Care (Sustain registry) provides the most current and comprehensive data for studying CLABSI among a national cohort of HPN patients in the United States. This is the first Sustain registry report detailing longitudinal data on CLABSI among HPN patients. To describe CLABSI rates for HPN patients followed in the Sustain registry from 2011-2014. Descriptive, χ 2 , and t tests were used to analyze data from the Sustain registry. Of the 1,046 HPN patients from 29 sites across the United States, 112 (10.7%) experienced 194 CLABSI events during 223,493 days of HPN exposure, for an overall CLABSI rate of 0.87 episodes/1,000 parenteral nutrition-days. Although the majority of patients were female (59%), adult (87%), white (75%), and with private insurance or Medicare (69%), CLABSI episodes per 1,000 parenteral nutrition-days were higher for men (0.69 vs 0.38), children (1.17 vs 0.35), blacks (0.91 vs 0.41), and Medicaid recipients (1.0 vs 0.38 or 0.39). Patients with implanted ports or double-lumen catheters also had more CLABSIs than those with peripherally inserted or central catheters or single-lumen catheters. Staphylococci were the most commonly reported pathogens. These data support findings of smaller studies about CLABSI risk for children and by catheter type and identify new potential risk factors, including gender, race, and insurance type. Additional studies are needed to determine effective interventions that will reduce HPN-associated CLABSI. Copyright © 2016 Association for Professionals in Infection Control and Epidemiology, Inc. Published by Elsevier Inc. All rights reserved.

  5. Nationwide patient registry for GNE myopathy in Japan.

    Science.gov (United States)

    Mori-Yoshimura, Madoka; Hayashi, Yukiko K; Yonemoto, Naohiro; Nakamura, Harumasa; Murata, Miho; Takeda, Shin'ichi; Nishino, Ichizo; Kimura, En

    2014-10-11

    GNE myopathy is a slowly progressive autosomal recessive myopathy caused by mutations in the GNE (glucosamine (UDP-N-acetyl)-2-epimerase/N-acetylmannosamine kinase) gene. This study aimed to (1) develop a nationwide patient registry for GNE myopathy in order to facilitate the planning of clinical trials and recruitment of candidates, and (2) gain further insight into the disease for the purpose of improving therapy and care. Medical records of genetically-confirmed patients with GNE myopathy at the National Center Hospital of the National Center of Neurology and Psychiatry (NCNP) were retrospectively reviewed in order to obtain data reflecting the severity and progression of the disease. We also referred to items in the datasheet of the nationwide registry of dystrophinopathy patients in the Registry of Muscular Dystrophies (Remudy). Items selected for the registration sheet included age, sex, age at onset, past history and complications, family history, body weight and height, pathological findings of muscle biopsy, grip power, walking ability, respiratory function, cardiac function, willingness to join upcoming clinical trials, and participation in patient associations. A copy of the original genetic analysis report was required of each patient. We successfully established the Remudy-GNE myopathy. Currently, 121 patients are registered nationwide, and 93 physicians from 73 hospitals collaborated to establish the registry. The mean age at onset was 27.7 ± 9.6 years, and 19.8% (24/121) of patients could walk without assistance. Mean presumed durations from onset to use of assistive devices (cane and/or braces) and a wheelchair, and loss of ambulation were 12.4, 15.2, and 21.1 years, respectively. Three patients had a past history and/or complication of idiopathic thrombocytopenia. To share the progress of this study with the community, newsletters were published on a regular basis, and included information regarding new phase I clinical trials for GNE

  6. Occupational dose assessment and national dose registry system in Iran

    International Nuclear Information System (INIS)

    Jafari-Zadeh, M.; Nazeri, F.; Hosseini-Pooya, S. M.; Taheri, M.; Gheshlaghi, F.; Kardan, M. R.; Babakhani, A.; Rastkhah, N.; Yousefi-Nejad, F.; Darabi, M.; Oruji, T.; Gholamali-Zadeh, Z.; Karimi-Diba, J.; Kazemi-Movahed, A. A.; Dashti-Pour, M. R.; Enferadi, A.; Jahanbakhshian, M. H.; Sadegh-Khani, M. R.

    2011-01-01

    This report presents status of external and internal dose assessment of workers and introducing the structure of National Dose Registry System of Iran (NDRSI). As well as types of individual dosemeters in use, techniques for internal dose assessment are presented. Results obtained from the International Atomic Energy Agency intercomparison programme on measurement of personal dose equivalent H p (10) and consistency of the measured doses with the delivered doses are shown. Also, implementation of dosimetry standards, establishment of quality management system, authorisation and approval procedure of dosimetry service providers are discussed. (authors)

  7. [Data from the IN-HF Outcome registry].

    Science.gov (United States)

    Misuraca, Gianfranco; Di Tano, Giuseppe; Camerini, Alberto; Cloro, Cosima; Gorini, Marco

    2012-05-01

    The IN-HF Outcome registry enrolled 1855 patients admitted for acute heart failure and 3755 outpatients with chronic heart failure seen at 64 cardiology units of the Italian Network-Heart Failure. We assessed gender-related differences in clinical characteristics, management, and short- and long-term mortality and morbidity outcomes. Women were older, more often hypertensive and with a higher prevalence of heart failure with preserved systolic function. Aggressive management was less frequent in women who underwent less often diagnostic and therapeutic procedures. We found no gender-related differences in either acute or long-term mortality nor in hospital readmissions.

  8. Results from a multicentre international registry of familial Mediterranean fever

    DEFF Research Database (Denmark)

    Ozen, Seza; Demirkaya, Erkan; Amaryan, Gayane

    2014-01-01

    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....../year and more frequent arthritis, pericarditis, chest pain, abdominal pain and vomiting compared to the other two groups. Multivariate analysis showed that the variables independently associated with severity of disease presentation were country of residence, presence of M694V mutation and positive family...

  9. The Importance of Patient Registries in Skin of Color.

    Science.gov (United States)

    Hinojosa, Jorge A; Pandya, Amit G

    2017-10-01

    Patient registries serve as powerful and cost-effective research tools that can help improve our understanding of disease pathogenesis and treatment. Although patient registries for various dermatologic diseases currently exist, few address diseases affecting primarily skin of color. Establishing patient registries for diseases that affect skin of color is one potential solution to overcoming some of the limitations researchers face when studying these disorders. Here, we present two patient registries in dermatology that may serve as examples of how patient registries can contribute to advancing our understanding of dermatologic diseases. We also address some of the potential benefits and limitations of patient registries. Copyright © 2017 The Authors. Published by Elsevier Inc. All rights reserved.

  10. Quality control and assurance in hematopoietic stem cell transplantation data registries in Japan and other countries.

    Science.gov (United States)

    Kuwatsuka, Yachiyo

    2016-01-01

    Observational studies from national and international registries with large volumes of patients are commonly performed to identify superior strategies for hematopoietic stem cell transplantation. Major international and national stem cell transplant registries collect outcome data using electronic data capture systems, and a systematic study support process has been developed. Statistical support for studies is available from some major international registries, and international and national registries also mutually collaborate to promote stem cell transplant outcome studies and transplant-related activities. Transplant registries additionally take measures to improve data quality to further improve the quality of outcome studies by utilizing data capture systems and manual data management. Data auditing can potentially even further improve data quality; however, human and budgetary resources can be limiting factors in system construction and audits of the Japanese transplant registry are not currently performed.

  11. Melanoma of the skin in the Danish Cancer Registry and the Danish Melanoma Database

    DEFF Research Database (Denmark)

    Pedersen, Sidsel Arnspang; Schmidt, Sigrun Alba Johannesdottir; Klausen, Siri

    2018-01-01

    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...

  12. A multiregional registry experience using an electronic medical record to optimize data capture for longitudinal outcomes in endovascular abdominal aortic aneurysm repair.

    Science.gov (United States)

    Hye, Robert J; Inui, Tazo S; Anthony, Faith F; Kiley, Mary-Lou; Chang, Robert W; Rehring, Thomas F; Nelken, Nicolas A; Hill, Bradley B

    2015-05-01

    Registries have been proven useful to assess clinical outcomes, but data entry and personnel expenses are challenging. We developed a registry to track patients undergoing endovascular aortic aneurysm repair (EVAR) in an integrated health care system, leveraging an electronic medical record (EMR) to evaluate clinical practices, device performance, surgical complications, and medium-term outcomes. This study describes the registry design, data collection, outcomes validation, and ongoing surveillance, highlighting the unique integration with the EMR. EVARs in six geographic regions of Kaiser Permanente were entered in the registry. Cases were imported using a screening algorithm of inpatient codes applied to the EMR. Standard note templates containing data fields were used for surgeons to enter preoperative, postoperative, and operative data as part of normal workflows in the operating room and clinics. Clinical content experts reviewed cases and entered any missing data of operative details. Patient comorbidities, aneurysm characteristics, implant details, and surgical outcomes were captured. Patients entered in the registry are followed up for life, and all relevant events are captured. Between January 2010 and June 2013, 2112 procedures were entered in the registry. Surgeon compliance with data entry ranges from 60% to 90% by region but has steadily increased over time. Mean aneurysm size was 5.9 cm (standard deviation, 1.3). Most patients were male (84%), were hypertensive (69%), or had a smoking history (79%). The overall reintervention rate was 10.8%: conversion to open repair (0.9%), EVAR revision (2.6%), other surgical intervention (7.3%). Of the reinterventions, 27% were for endoleaks (I, 34.3%; II, 56.9%; III, 8.8%; IV and V, 0.0%), 10.5% were due to graft malfunction, 3.4% were due to infection, and 2.3% were due to rupture. Leveraging an EMR provides a robust platform for monitoring short-term and midterm outcomes after abdominal aortic aneurysm repair

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

    International Nuclear Information System (INIS)

    1996-05-01

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

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

    Science.gov (United States)

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

    2017-05-01

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

  15. Feasibility of establishing an Australian ACL registry: a pilot study by the Australian Orthopaedic Association National Joint Replacement Registry (AOANJRR).

    Science.gov (United States)

    Lekkas, Christina; Clarnette, Richard; Graves, Stephen E; Rainbird, Sophia; Parker, David; Lorimer, Michelle; Paterson, Roger; Roe, Justin; Morris, Hayden; Feller, Julian A; Annear, Peter; Forster, Ben; Hayes, David

    2017-05-01

    Rupture of the anterior cruciate ligament (ACL) is a common and debilitating injury that impacts significantly on knee function and risks the development of degenerative arthritis. The outcome of ACL surgery is not monitored in Australia. The optimal treatment is unknown. Consequently, the identification of best practice in treating ACL is crucial to the development of improved outcomes. The Australian Knee Society (AKS) asked the Australian Orthopaedic Association (AOA) to consider establishing a national ACL registry. As a first step, a pilot study was undertaken by the Australian Orthopaedic Association National Joint Replacement Registry (AOANJRR) to test the hypothesis that collecting the required information in the Australian setting was possible. Surgeons completed an operative form which provided comprehensive information on the surgery undertaken. Patients provided pre- and post-operative questionnaires including the Knee Injury and Osteoarthritis Outcome Score (KOOS) and the Marx Activity Scale (MA Scale). The number of ACL procedures undertaken at each hospital during the recruitment period was compared against State Government Health Department separation data. A total of 802 patients were recruited from October 2011 to January 2013. The overall capture rate for surgeon-derived data was 99%, and the capture rate for the pre-operative patient questionnaire was 97.9%. At 6 months, patient-reported outcomes were obtained from 55% of patients, and 58.5% of patients at 12 months. When checked against State Government Health Department separation data, 31.3% of procedures undertaken at each study hospital were captured in the study. It is possible to collect surgeon-derived and pre-operative patient-reported data, following ACL reconstruction in Australia. The need to gain patient consent was a limiting factor to participation. When patients did consent to participate in the study, we were able to capture nearly 100% of surgical procedures. Patient consent

  16. EU Registries Forum Meeting is a new step in the development of international cooperation in rheumatic diseases registries

    Directory of Open Access Journals (Sweden)

    D. E. Karateev

    2015-01-01

    Full Text Available EU Registries Forum Meeting took place 2–3 March 2015 in Chantilly, France. Leading experts in the field participated in the forum. Registersnot only of Western Europe but also of Russia, USA, Canada and Japan were presented at the meeting. The most important directions of development of modern registers of patients with rheumatic diseases are the inclusion of comprehensive data on the process of care in practice, the integration of the data of registers in different countries, the active collection of information on the application of the new anti-rheumatic drugs

  17. What are the essential features of a successful surgical registry? a systematic review.

    Science.gov (United States)

    Mandavia, Rishi; Knight, Alec; Phillips, John; Mossialos, Elias; Littlejohns, Peter; Schilder, Anne

    2017-09-24

    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

  18. Eesti loomapidamise areng: PRIA põllumajandusloomade registri asutamisest sai 1. oktoobril 8 aastat / Kiido Levin

    Index Scriptorium Estoniae

    Levin, Kiido

    2008-01-01

    PRIA põllumajandusloomade registri andmete põhjal analüüsitakse Eesti loomakasvatuse viimaste aastate suundumusi ning tutvustatakse Euroopa Liidu regulatsioone loomade registreerimisel. Tabelid, graafikud

  19. Clinical trial registries: a practical guide for sponsors and researchers of medicinal products

    National Research Council Canada - National Science Library

    Foote, MaryAnn

    2006-01-01

    ... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ix MaryAnn Foote Clinical trial registries and publication of results - a primer . . . . . . . . . . . . . . . . . . 1 Ana Marušić and Charlotte Haug The journal...

  20. The International Deep Brain Stimulation Registry and Database for Gilles de la Tourette Syndrome: How Does it Work?

    Directory of Open Access Journals (Sweden)

    Wissam eDeeb

    2016-04-01

    Full Text Available Tourette Syndrome (TS is a neuropsychiatric disease characterized by a combination of motor and vocal tics. Deep brain stimulation (DBS, already widely utilized for Parkinson’s disease and other movement disorders, is an emerging therapy for select and severe cases of TS that are resistant to medication and behavioral therapy. Over the last two decades, DBS has been used experimentally to manage severe TS cases. The results of case reports and small case series have been variable but in general positive. The reported interventions have, however, been variable, and there remain non-standardized selection criteria, various brain targets, differences in hardware, as well as variability in the programming parameters utilized. DBS centers perform only a handful of TS DBS cases each year, making large-scale outcomes difficult to study and to interpret. These limitations, coupled with the variable effect of surgery, and the overall small numbers of TS patients with implanted DBS worldwide, have delayed regulatory agency approval (e.g. FDA and equivalent agencies around the world. The Tourette Association of America, in response to the worldwide need for a more organized and collaborative effort, launched an international TS DBS registry and database. The main goal of the project has been to share data, uncover best practices, improve outcomes, and to provide critical information to regulatory agencies. The international registry and database has improved the communication and collaboration among TS DBS centers worldwide. In this paper we will review some of the key operation details for the international TS DBS database and registry.

  1. First- Versus Second-Generation Drug-Eluting Stents in Acute Coronary Syndromes (Katowice-Zabrze Registry).

    Science.gov (United States)

    Kawecki, Damian; Morawiec, Beata; Dola, Janusz; Wanha, Wojciech; Smolka, Grzegorz; Pluta, Aleksandra; Marcinkiewicz, Kamil; Ochała, Andrzej; Nowalany-Kozielska, Ewa; Wojakowski, Wojciech

    2016-05-01

    There are sparse data on the performance of different types of drug-eluting stents (DES) in acute and real-life setting. The aim of the study was to compare the safety and efficacy of first- versus second-generation DES in patients with acute coronary syndromes (ACS). This all-comer registry enrolled consecutive patients diagnosed with ACS and treated with percutaneous coronary intervention with the implantation of first- or second-generation DES in one-year follow-up. The primary efficacy endpoint was defined as major adverse cardiac and cerebrovascular event (MACCE), a composite of all-cause death, nonfatal myocardial infarction, target-vessel revascularization and stroke. The primary safety outcome was definite stent thrombosis (ST) at one year. From the total of 1916 patients enrolled into the registry, 1328 patients were diagnosed with ACS. Of them, 426 were treated with first- and 902 with second-generation DES. There was no significant difference in the incidence of MACCE between two types of DES at one year. The rate of acute and subacute ST was higher in first- vs. second-generation DES (1.6% vs. 0.1%, p < 0.001, and 1.2% vs. 0.2%, p = 0.025, respectively), but there was no difference regarding late ST (0.7% vs. 0.2%, respectively, p = 0.18) and gastrointestinal bleeding (2.1% vs. 1.1%, p = 0.21). In Cox regression, first-generation DES was an independent predictor for cumulative ST (HR 3.29 [1.30-8.31], p = 0.01). In an all-comer registry of ACS, the one-year rate of MACCE was comparable in groups treated with first- and second-generation DES. The use of first-generation DES was associated with higher rates of acute and subacute ST and was an independent predictor of cumulative ST.

  2. Patients Receiving Integrative Medicine Effectiveness Registry (PRIMIER) of the BraveNet practice-based research network: study protocol.

    Science.gov (United States)

    Dusek, Jeffery A; Abrams, Donald I; Roberts, Rhonda; Griffin, Kristen H; Trebesch, Desiree; Dolor, Rowena J; Wolever, Ruth Q; McKee, M Diane; Kligler, Benjamin

    2016-02-04

    Integrative medicine (IM) provides patient-centered care and addresses the full range of physical, emotional, mental, social, spiritual, and environmental influences that affect a person's health. IM is a "whole systems" approach that employs multiple modalities as opposed to an isolated complementary therapy. Thus, studying outcomes of IM is more challenging than evaluating an isolated intervention. Practice-based research networks (PBRNs) allow for clinicians/investigators at multiple diverse sites using common methodology to pool their data, increase participant sample size and increase generalizability of results. To conduct real-world, practice-based research, the Bravewell Collaborative founded BraveNet in 2007 as the first national integrative medicine PBRN. Patients Receiving Integrative Medicine Effectiveness Registry (PRIMIER) is a prospective, non-randomized, observational evaluation conducted at fourteen clinical sites. Participants receive a non-standardized, personalized, multimodal IM approach for various medical conditions. Using the REDCap electronic platform, an anticipated 10,000 study participants will complete patient-reported outcome measures including Patient Reported Outcomes Measurement Information System (PROMIS)-29, Perceived Stress Scale-4, and the Patient Activation Measure at baseline, 2, 4, 6, 12, 18 and 24 months. Extractions from participants' electronic health records include IM services received, as well as ICD diagnostic codes, and CPT billing codes associated with each IM visit. Repeated-measures analyses will be performed on data to assess change from baseline through 24 months with planned subgroup analyses to include specific clinical population and specific IM intervention or combinations. As the PRIMIER registry grows, we anticipate that our results would provide an indication of the promise of PBRN research efforts in IM. Analyses will incorporate a large sample of participants and an expected 10-year observation period

  3. Idiopathic versus secondary venous thromboembolism. Findings of the RIETE registry.

    Science.gov (United States)

    Pedrajas, J M; Garmendia, C; Portillo, J; Gabriel, F; Mainez, C; Yera, C; Monreal, M

    2014-10-01

    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.

  4. Process improvement: a multi-registry database abstraction success story.

    Science.gov (United States)

    Abrich, Victor; Rokey, Roxann; Devadas, Christopher; Uebel, Julie

    2014-01-01

    The St. Joseph Hospital/Marshfield Clinic Cardiac Database Registry submits data to the National Cardiovascular Data Registry (NCDR) and to the Society of Thoracic Surgeons (STS) National Database. Delayed chart abstraction is problematic, since hospital policy prohibits patient care clarifications made to the medical record more than 1 month after hospital discharge. This can also lead to late identification of missed care opportunities and untimely notification to providers. Our institution was 3.5 months behind in retrospective postdischarge case abstraction. A process improvement plan was implemented to shorten this delay to 1 month postdischarge. Daily demand of incoming cases and abstraction capacity were determined for 4 employees. Demand was matched to capacity, with the remaining time allocated to reducing backlog. Daily demand of new cases was 17.1 hours. Daily abstraction capacity was 24 hours, assuming 6 hours of effective daily abstraction time per employee, leaving 7 hours per day for backlogged case abstraction. The predicted time to reach abstraction target was 10 weeks. This was accomplished after 10 weeks, as predicted, leading to a 60% reduction of backlogged cases. The delay of postdischarge chart abstraction was successfully shortened from 3.5 months to 1 month. We intend to maintain same-day abstraction efficiency without reaccumulating substantial backlog.

  5. EPA Facility Registry Service (FRS): ER_EPLAN

    Science.gov (United States)

    This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link to the Emergency Response Information System (E-PLAN) provides first responders and other emergency response personnel with on-site hazardous chemical information for facilities across the us. It provides EPA's tier II reporting data along with other important information including maps of all facilities with a specified hazardous material, chemical hazards response information system (CHRIS) data, material safety data sheets (MSDS), chemical profiles, emergency response guidebook (ERG) pages, national fire protection association (NPA) codes, and facility risk management plans (RMPs). 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 E-PLAN facilities once the E-PLAN 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.

  6. Toxic substances registry system: Index of material safety data sheets

    Science.gov (United States)

    1993-01-01

    The Material Safety Data Sheets (MSDS's) listed in this index reflect product inventories and associated MSDS's which were submitted to the Toxic Substances Registry database maintained by the Base Operations Contractor at the Kennedy Space Center. The purpose of this index is to provide KSC government, contractor, and tenant organizations a means to access information on the hazards associated with these chemicals. The Toxic Substance Registry Service (TSRS) was established to manage information dealing with the storage and use of toxic and otherwise hazardous materials at KSC. As a part of this service, the BOC Environmental Health Services maintains a central repository of MSDS's which were provided to TSRS. The data on the TSRS are obtained from NASA, contractor, and tenant organizations who use or store hazardous materials at KSC. It is the responsibility of these organizations to conduct inventories, obtain MSDS's, distribute Hazard Communication information to their employees, and otherwise implement compliance with appropriate Federal, State, and NASA Hazard Communication and Worker Right-to-Know regulations and policies.

  7. Achieving interoperability for metadata registries using comparative object modeling.

    Science.gov (United States)

    Park, Yu Rang; Kim, Ju Han

    2010-01-01

    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.

  8. Empiricist Interventions

    DEFF Research Database (Denmark)

    Munk, Anders Kristian; Abrahamsson, Sebastian

    2012-01-01

    Recent papers by prominent scholars in science and technology studies (notably JohnLaw and Bruno Latour) have crystallized a fundamental disagreement about the scope and purpose of intervention in actor-network theory or what we here choose to bracket as empirical philosophy. While the precept...

  9. Breast cancer survival rate according to data of cancer registry and death registry systems in Bushehr province, 2001-2013

    Directory of Open Access Journals (Sweden)

    Zahra Rampisheh

    2015-09-01

    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.

  10. Trauma Registry of the Pan-American Trauma Society: One year of experience in two hospitals in southwest Colombia

    Science.gov (United States)

    Ordoñez, Carlos A; Rojas-Mirquez, Johanna Carolina; Bonilla-Escobar, Francisco Javier; Badiel, Marisol; Miñán Arana, Fernando; González, Adolfo; Pino, Luis Fernando; Uribe-Gómez, Amadeus; Herrera, Mario Alain; Gutiérrez-Martínez, Maria Isabel; Puyana, Juan Carlos; Abutanos, Michael; Ivatury, Rao R

    2016-01-01

    Background: Trauma information systems are needed to improve decision making and to identify potential areas of intervention. Objective: To describe the first year of experience with a trauma registry in two referral centers in southwest Colombia. Methods: The study was performed in two referral centers in Cali. Patients with traumatic injuries seen between January 1 and December 31, 2012, were included. The collected information included demographics, mechanism of trauma, injury severity score (ISS), and mortality. A descriptive analysis was carried out. Results: A total of 17,431 patients were registered, of which 67.8% were male with an average age of 30 (±20) years. Workplace injuries were the cause of emergency consultations in 28.2% of cases, and falls were the most common mechanism of trauma (37.3%). Patients with an ISS ≥15 were mostly found in the 18-35-year age range (6.4%). Most patients who suffered a gunshot wound presented an ISS ≥15. A total of 2.5% of all patients died, whereas the mortality rate was 54% among patients with an ISS ≥15 and a gunshot wound. Conclusion: Once the trauma registry was successfully implemented in two institutions in Cali, the primary causes of admission were identified as falls and workplace injuries. The most severely compromised patients were in the population range between 18 and 35 years of age. The highest mortality was caused by gunshot wounds. PMID:27821894

  11. POST Forms More Than Advance Directives Associated With Out-of-Hospital Death: Insights From a State Registry.

    Science.gov (United States)

    Pedraza, Sandra L; Culp, Stacey; Falkenstine, Evan C; Moss, Alvin H

    2016-02-01

    Patients' end-of-life care outcomes often do not reflect their preferences. Ninety-two percent of West Virginians prefer to die outside the hospital, yet only 58.8% do. To compare out-of-hospital death (OHD) between those with completed advance directive (AD) and Physician Orders for Scope of Treatment (POST) forms. This was a retrospective cohort study of 2027 West Virginians who submitted AD and/or POST forms to the West Virginia e-Directive Registry and died between October 1, 2010 and December 31, 2013. A multivariable logistic regression model examined the relationship between OHD by form type while adjusting for age and enrollment in hospice. Patients who completed an AD were significantly less likely to have an OHD (56.9%) than those who completed a POST form with comfort measures orders or a POST form with limited/full intervention orders (88.4% and 75.9%, respectively, P < 0.001). The odds of OHD were significantly higher for patients with POST forms with comfort measures orders than for those with ADs (OR 4.239, P < 0.001). A prospective study is needed to validate that a statewide POST program and registry provide a more effective way than ADs to express, document, and honor patients' preferences for an OHD. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  12. A prospective observational study of the use of desflurane anesthesia in Indian adult inpatients undergoing surgery: The Registry in India on Suprane Emergence registry

    Directory of Open Access Journals (Sweden)

    Mukul Chandra Kapoor

    2017-01-01

    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.

  13. Sleep Difficulties and Medications in Children With Autism Spectrum Disorders: A Registry Study.

    Science.gov (United States)

    Malow, Beth A; Katz, Terry; Reynolds, Ann M; Shui, Amy; Carno, Margaret; Connolly, Heidi V; Coury, Daniel; Bennett, Amanda E

    2016-02-01

    Sleep difficulties are common in children with autism spectrum disorders, with wide-ranging effects on the child's daytime behavior. We reviewed data within our Autism Speaks Autism Treatment Network Registry to determine the prevalence of sleep difficulties and patterns of medication use. Data from 1518 children ages 4 to 10 years were analyzed to determine the number of children documented to have sleep difficulties by parent-completed questionnaires and clinician-completed forms and how these findings related to the use of sleep medications. The Children's Sleep Habits Questionnaire total score was ≥41 (associated with clinically significant sleep problems in past research) in 71% of children. The prevalence of sleep diagnoses was less frequent (30% of children aged 4-10 years; P sleep were prescribed in 46% of 4- to 10-year-olds given a sleep diagnosis. The most common medication used for sleep was melatonin followed by α-agonists, with a variety of other medications taken for sleep (anticonvulsants, antidepressants, atypical antipsychotics, and benzodiazepines). Children taking medications for sleep had worse daytime behavior and pediatric quality of life than children not taking sleep medications. Parent concerns about sleep may not be reflected in the information gathered during a clinic visit, supporting the need to develop screening practice pathways for sleep in autism spectrum disorders. Furthermore, many medications taken for sleep have adverse effects, supporting the need for evidence-based interventions in this population. Copyright © 2016 by the American Academy of Pediatrics.

  14. The Canadian Cardiac Rehabilitation Registry: Inaugural Report on the Status of Cardiac Rehabilitation in Canada

    Directory of Open Access Journals (Sweden)

    Sherry L. Grace

    2015-01-01

    Full Text Available Introduction. There are over 200 Cardiovascular Rehabilitation (CR programs in Canada, providing services to more than 50,000 new patients annually. The objective of this study was to describe the impact of CR in Canada. Methods. A retrospective analysis of Canadian CR Registry data is presented. There were 12 programs participating, with 4546 CR participants. Results. The average wait time between patient referral and CR admission was 68 ± 64 days. Participants were 66.3 ± 11.5 years old, 71% male, and 82% White. The three leading referral events were coronary artery bypass graft surgery, percutaneous coronary intervention, and acute coronary syndrome. At discharge, data were available for ~90% of participants. Significant improvements in blood pressure (systolic pre-CR 123.5 ± 17.0, post-CR 121.5 ± 15.8 mmHg; p<.001, lipids, adiposity, and exercise capacity (peak METs pre-CR 6.5 ± 2.8, post-CR 7.2 ± 3.1; p<.001 were observed. However, target attainment for some risk factors was suboptimal. Conclusions. This report provides the first snapshot of the beneficial effects of CR in Canada. Not all patients are equally represented in these programs, however, leaving room for more referral of diverse patients. Greater attainment of risk reduction targets should be pursued.

  15. Uterine artery embolization for treatment of leiomyomata: long-term outcomes from the FIBROID Registry.

    Science.gov (United States)

    Goodwin, Scott C; Spies, James B; Worthington-Kirsch, Robert; Peterson, Eric; Pron, Gaylene; Li, Shuang; Myers, Evan R

    2008-01-01

    To assess long-term clinical outcomes of uterine artery embolization across a wide variety of practice settings in a large patient cohort. The Fibroid Registry for Outcomes Data (FIBROID) for Uterine Embolization was a 3-year, single-arm, prospective, multi-center longitudinal study of the short- and long-term outcomes of uterine artery embolization for leiomyomata. Two thousand one hundred twelve patients with symptomatic leiomyomata were eligible for long-term follow-up at 27 sites representing a geographically diverse set of practices, including academic centers, community hospitals, and closed-panel health maintenance organizations. At 36 months after treatment, 1,916 patients remained in the study, and of these, 1,278 patients completed the survey. The primary measures of outcome were the symptom and health-related quality-of-life scores from the Uterine Fibroid Symptom and Quality of Life questionnaire. Mean symptom scores improved 41.41 points (P<.001), and the quality of life scores improved 41.47 points (P<.001), both moving into the normal range for this questionnaire. The improvements were independent of practice setting. During the 3 years of the study, Kaplan-Meier estimates of hysterectomy, myomectomy, or repeat uterine artery embolization were 9.79%, 2.82%, and 1.83% of the patients, respectively. Uterine artery embolization results in a durable improvement in quality of life. These results are achievable when the procedure is performed in any experienced community or academic interventional radiology practice. III.

  16. Tuberculosis in Malaysia: predictors of treatment outcomes in a national registry.

    Science.gov (United States)

    Liew, S M; Khoo, E M; Ho, B K; Lee, Y K; Mimi, O; Fazlina, M Y; Asmah, R; Lee, W K; Harmy, M Y; Chinna, K; Jiloris, F D

    2015-07-01

    To determine treatment outcomes and associated predictors of all patients registered in 2012 with the Malaysian National Tuberculosis (TB) Surveillance Registry. Sociodemographic and clinical data were analysed. Unfavourable outcomes included treatment failure, transferred out and lost to follow-up, treatment defaulters, those not evaluated and all-cause mortality. In total, 21 582 patients were registered. The mean age was 42.36 ± 17.77 years, and 14.2% were non-Malaysians. The majority were new cases (93.6%). One fifth (21.5%) had unfavourable outcomes; of these, 46% died, 49% transferred out or defaulted and 1% failed treatment. Predictors of unfavourable outcomes were older age, male sex, foreign citizenship, lower education, no bacille Calmette-Guérin (BCG) vaccination scar, treatment in tertiary settings, smoking, previous anti-tuberculosis treatment, human immunodeficiency virus infection, not receiving directly observed treatment, advanced chest radiography findings, multidrug-resistant TB (MDR-TB) and extra-pulmonary TB. For all-cause mortality, predictors were similar except for rural dwelling and nationality (higher mortality among locals). Absence of BCG scar, previous treatment for TB and MDR-TB were not found to be predictors of all-cause mortality. Indigenous populations in East Malaysia had lower rates of unfavourable treatment outcomes. One fifth of TB patients had unfavourable outcomes. Intervention strategies should target those at increased risk of unfavourable outcomes and all-cause mortality.

  17. Past, Present and Future of the Civil Registry in Cuba

    Directory of Open Access Journals (Sweden)

    Malena Proenza-Reyes

    2016-01-01

    Full Text Available The registration status of people becomes public activity of general interest to preconstitución instrument considered proof of marital status and legitimacy in the traffic. In order to illustrate the activity of the Civil Registry in Cuba to bring with greater impact on students and the knowledge of lawyers as significant activity, from the investigative shortcomings in this field suffers national law, they are presented a result the main legislative history of this institution and features distinguish its operation in different historical periods. In that pursuit used methods of social research as historical logic, analysis–synthesis and content analysis, the interview was used as instrument to collect valuable information on the issue.

  18. Report of Incidence and Mortality in China Cancer Registries, 2008

    Science.gov (United States)

    Chen, Wan-qing; Zheng, Rong-shou; Zhang, Si-wei; Li, Ni; Zhao, Ping; Li, Guang-lin; Wu, Liang-you

    2012-01-01

    Objective Annual cancer incidence and mortality in 2008 were provided by National Central Cancer Registry in China, which data were collected from population-based cancer registries in 2011. Methods There were 56 registries submitted their data in 2008. After checking and evaluating the data quality, total 41 registries’ data were accepted and pooled for analysis. Incidence and mortality rates by area (urban or rural areas) were assessed, as well as the age- and sex-specific rates, age-standardized rates, proportions and cumulative rate. Results The coverage population of the 41 registries was 66,138,784 with 52,158,495 in urban areas and 13,980,289 in rural areas. There were 197,833 new cancer cases and 122,136 deaths in cancer with mortality to incidence ratio of 0.62. The morphological verified rate was 69.33%, and 2.23% of cases were identified by death certificate only. The crude cancer incidence rate in all areas was 299.12/100,000 (330.16/100,000 in male and 267.56/100,000 in female) and the age-standardized incidence rates by Chinese standard population (ASIRC) and world standard population (ASIRW) were 148.75/100,000 and 194.99/100,000, respectively. The cumulative incidence rate (0–74 years old) was of 22.27%. The crude incidence rate in urban areas was higher than that in rural areas. However, after adjusted by age, the incidence rate in urban was lower than that in rural. The crude cancer mortality was 184.67/100,000 (228.14/100,000 in male and 140.48/100,000 in female), and the age-standardized mortality rates by Chinese standard population (ASMRC) and by world population were 84.36/100,000 and 114.32/100,000, respectively. The cumulative mortality rate (0–74 years old) was of 12.89%. Age-adjusted mortality rates in urban areas were lower than that in rural areas. The most common cancer sites were lung, stomach, colon-rectum, liver, esophagus, pancreas, brain, lymphoma, breast and cervix which accounted for 75% of all cancer incidence. Lung

  19. European biliary atresia registries: summary of a symposium

    DEFF Research Database (Denmark)

    Petersen, C.; Harder, D.; Abola, Z.

    2008-01-01

    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...... registered with EBAR via its website (www.biliary-atresia.com). In June 2006, the first meeting was held to evaluate results and launch further initiatives. During a 5-year period, 60 centers from 19 European countries and Israel sent completed registration forms for a total of 514 BA patients. Assuming......, centralization of surgery). In conclusion, EBAR represents the first attempt at an overall evaluation of the outcome of BA from a pan-European perspective. The natural history and outcome of biliary atresia is of considerable relevance to a European population. It is essential that there is further support...

  20. The Spanish National Dose Registry and Spanish radiation passbooks

    International Nuclear Information System (INIS)

    Hernandez, A.; Martin, A.; Villanueva, I.; Amor, I.; Butragueno, J.L.

    2001-01-01

    The Spanish National Dose Registry (BDN) is the Nuclear Safety Council's (CSN) national database of occupational exposure to radiation. Each month BDN receives records of individual external doses from approved dosimetry services. The dose records include information regarding the occupational activities of exposed workers. The dose information and the statistical analysis prepared by the BDN are a useful tool for effective operational protection of occupationally exposed workers and a support for the CSN in the development and application of the ALARA principle. The Spanish radiation passbook was introduced in 1990 and since then CSN, as regulatory authority, has required that all outside workers entering controlled areas should have radiation passbooks. Nowadays, CSN has implemented improvements in the Spanish radiation Passbooks, taking into account previous experience and Directive 96/29/EURATOM. (author)

  1. Vision for a Global Registry of Anticipated Public Health Studies

    Science.gov (United States)

    Choi, Bernard C.K.; Frank, John; Mindell, Jennifer S.; Orlova, Anna; Lin, Vivian; Vaillancourt, Alain D.M.G.; Puska, Pekka; Pang, Tikki; Skinner, Harvey A.; Marsh, Marsha; Mokdad, Ali H.; Yu, Shun-Zhang; Lindner, M. Cristina; Sherman, Gregory; Barreto, Sandhi M.; Green, Lawrence W.; Svenson, Lawrence W.; Sainsbury, Peter; Yan, Yongping; Zhang, Zuo-Feng; Zevallos, Juan C.; Ho, Suzanne C.; de Salazar, Ligia M.

    2007-01-01

    In public health, the generation, management, and transfer of knowledge all need major improvement. Problems in generating knowledge include an imbalance in research funding, publication bias, unnecessary studies, adherence to fashion, and undue interest in novel and immediate issues. Impaired generation of knowledge, combined with a dated and inadequate process for managing knowledge and an inefficient system for transferring knowledge, mean a distorted body of evidence available for decisionmaking in public health. This article hopes to stimulate discussion by proposing a Global Registry of Anticipated Public Health Studies. This prospective, comprehensive system for tracking research in public health could help enhance collaboration and improve efficiency. Practical problems must be discussed before such a vision can be further developed. PMID:17413073

  2. Under-reporting of major birth defects in Northwest Russia: a registry-based study

    Science.gov (United States)

    Kovalenko, Anton A.; Brenn, Tormod; Odland, Jon Øyvind; Nieboer, Evert; Krettek, Alexandra; Anda, Erik Eik

    2017-01-01

    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

  3. The North Carolina Online Sex Offender Registry: Awareness and Utilization by Childcare Providers

    Science.gov (United States)

    White, Jennifer L.; Malesky, L. Alvin, Jr.

    2009-01-01

    This study examined childcare providers' usage of the North Carolina Sex Offender and Public Protection Registry. One hundred twenty three childcare providers in 76 counties in North Carolina were surveyed via telephone interview about their utilization of the registry Web site. Responses revealed that most providers knew about the registry…

  4. Preliminary data from a de novo trauma registry | Njihia | Annals of ...

    African Journals Online (AJOL)

    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 ...

  5. Renal replacement therapy registries--time for a structured data quality evaluation programme

    NARCIS (Netherlands)

    Couchoud, Cécile; Lassalle, Mathilde; Cornet, Ronald; Jager, Kitty J.

    2013-01-01

    Registries in the area of renal replacement therapy (RRT) are intended to be a tool for epidemiological research, health care planning and improvement of quality of care. In this perspective, the value of a population-based RRT registry and its ability to achieve its goals rely heavily on the

  6. Data quality in the Danish National Acute Leukemia Registry: A Hematological Data Resource

    DEFF Research Database (Denmark)

    Østgaard, L.S.G.; Nørgaard, J.M.; Severinsen, Marianne Tang

    2013-01-01

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

  7. The state of digitisation of the land registry operations in Uganda ...

    African Journals Online (AJOL)

    The findings suggest that, though efforts are in place to digitise the land registry in Uganda, the bulk of the records still exist in paper format. The authors recommend strengthening the management of both paper and digital records as a matter of urgency if the land registry is to continue protecting the vital evidence that the ...

  8. Renal replacement therapy in Europe: a summary of the 2012 ERA-EDTA Registry Annual Report

    NARCIS (Netherlands)

    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.

    2015-01-01

    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

  9. Renal replacement therapy in Europe: a summary of the 2011 ERA-EDTA Registry Annual Report

    NARCIS (Netherlands)

    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.

    2014-01-01

    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

  10. Medical Specialty Society Sponsored Data Registries – Opportunities in Plastic Surgery

    Science.gov (United States)

    Hume, Keith M.; Crotty, Catherine A.; Simmons, Christopher J.; Neumeister, Michael W.; Chung, Kevin C.

    2014-01-01

    Clinical data registries are commonly used worldwide and are implemented for a variety of purposes ranging from physician or facility clinic logs for tracking patients, collecting outcomes data, to measuring quality improvement or safety of medical devices. In the United States, the Food and Drug Administration has used data collected through registries to facilitate the drug and device regulatory process, ongoing surveillance during the product life-cycle, and for disease appraisals. Furthermore, the Centers for Medicare and Medicaid Services, in certain instances, base registry participation and submitting data to registries as factors for reimbursement decisions. The purpose of this article is to discuss the use of clinical data registries, the role that medical specialty societies, in particular the American Society of Plastic Surgeons and The Plastic Surgery Foundation, can have in the development and management of registries, and the opportunities for registry use in Plastic Surgery. As outcomes data are becoming essential measures of quality healthcare delivery, participating in registry development and centralized data collection has become a critical effort for Plastic Surgery to engage in to proactively participate in the national quality and performance measurement agenda. PMID:23806935

  11. High Mortality without ESCAPE: The Registry of Heart Failure Patients Receiving Pulmonary Artery Catheters without Randomization

    Science.gov (United States)

    Allen, Larry A.; Rogers, Joseph G.; Warnica, J. Wayne; DiSalvo, Thomas G.; Tasissa, Gudaye; Binanay, Cynthia; O’Connor, Christopher M.; Califf, Robert M.; Leier, Carl V.; Shah, Monica R.; Stevenson, Lynne W.

    2008-01-01

    Background In ESCAPE, there was no difference in days alive and out of the hospital for patients with decompensated heart failure (HF) randomly assigned to therapy guided by pulmonary artery catheter (PAC) plus clinical assessment versus clinical assessment alone. The external validity of these findings is debated. Methods and Results ESCAPE sites enrolled 439 patients receiving PAC without randomization in a prospective registry. Baseline characteristics, pertinent trial exclusion criteria, reasons for PAC use, hemodynamics, and complications were collected. Survival was determined from the National Death Index and the Alberta Registry. On average, registry patients had lower blood pressure, worse renal function, less neurohormonal antagonist therapy, and higher use of intravenous inotropes as compared with trial patients. Although clinical assessment anticipated less volume overload and greater hypoperfusion among the registry population, measured filling pressures were similarly elevated in the registry and trial, while measured perfusion was slightly higher among registry patients. Registry patients had longer hospitalization (13 vs. 6 days, p <0.001) and higher 6-month mortality (34% vs. 20%, p < 0.001) than trial patients. Conclusions The decision to use PAC without randomization identified a population with higher disease severity and risk of mortality. This prospective registry highlights the complex context of patient selection for randomized trials. PMID:18926438

  12. Validation of spontaneous abortion diagnoses in the Danish National Registry of Patients

    DEFF Research Database (Denmark)

    Lohse, Sarah Rytter; Farkas, Dóra Körmendiné; Lohse, Nicolai

    2010-01-01

    The purpose of this study is to validate the diagnosis of spontaneous abortion (SA) recorded in the Danish National Registry of Patients (DNRP).......The purpose of this study is to validate the diagnosis of spontaneous abortion (SA) recorded in the Danish National Registry of Patients (DNRP)....

  13. An evolution of trauma care evaluation: A thesis on trauma registry and outcome prediction models

    NARCIS (Netherlands)

    Joosse, P.

    2013-01-01

    Outcome prediction models play an invaluable role in the evaluation and improvement of modern trauma care. Trauma registries underlying these outcome prediction models need to be accurate, complete and consistent. This thesis focused on the opportunities and limitations of trauma registries and

  14. 78 FR 44625 - Proposed Information Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment...

    Science.gov (United States)

    2013-07-24

    ... DEPARTMENT OF VETERANS AFFAIRS Proposed Information Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment Questionnaire) Activity; Extension of Comment Period AGENCY: Veterans Health... to ``OMB Control No. 2900--NEW, Open Burn Pit Registry Airborne Hazard Self-Assessment Questionnaire...

  15. One of a Kind - The Pan African Clinical Trials Registry, a regional ...

    African Journals Online (AJOL)

    In 2007 the International Committee of Medical Journal Editors amended their support of this initiative stating that only trials registered prospectively on a member registry of the WHO's Network of Primary Registers would be published. The Pan African Clinical Trials Registry (www.pactr.org), was established in early 2007 ...

  16. Classification of Topographical Pattern of Spasticity in Cerebral Palsy: A Registry Perspective

    Science.gov (United States)

    Reid, Susan M.; Carlin, John B.; Reddihough, Dinah S.

    2011-01-01

    This study used data from a population-based cerebral palsy (CP) registry and systematic review to assess the amount of heterogeneity between registries in topographical patterns when dichotomised into unilateral (USCP) and bilateral spastic CP (BSCP), and whether the terms diplegia and quadriplegia provide useful additional epidemiological…

  17. Percutaneous patent foramen ovale closure: the Paradoxical Cerebral Embolism Prevention Registry.

    Science.gov (United States)

    Paiva, Luís; Dinis, Paulo; Providência, Rui; Costa, Marco; Margalho, Susana; Goncalves, Lino

    2015-03-01

    The natural history and therapeutic interventions for secondary prevention after a cerebrovascular event in patients with patent foramen ovale (PFO) are not yet established. This study aims to assess the safety and efficacy of percutaneous PFO closure in a population of patients with ischemic cerebrovascular disease of unknown etiology. This prospective observational study included patients with a history of cryptogenic transient ischemic attack (TIA) or stroke who underwent percutaneous PFO closure. The effectiveness of the device for the secondary prevention of TIA or stroke was assessed by comparing observed events in the sample with expected events for this clinical setting. The sample included 193 cases of percutaneous PFO closure (age 46.4 ± 13.1 years, 62.2% female) with a mean follow-up of 4.3 ± 2.2 years, corresponding to a total exposure to ischemic events of 542 patient-years. The high-risk characteristics of the PFO were assessed prior to device implantation. There were seven primary endpoint events during follow-up (1.3 per 100 patient-years), corresponding to a relative risk reduction of 68.2% in recurrent TIA or stroke compared to medical therapy alone. The procedure was associated with a low rate of device- or intervention-related complications (1.5%). In this long-term registry, percutaneous PFO closure was shown to be a safe and effective therapy for the secondary prevention of cryptogenic stroke or TIA. Copyright © 2014 Sociedade Portuguesa de Cardiologia. Published by Elsevier España. All rights reserved.

  18. Clinical and Demographic Features of Vertigo: Findings from the REVERT Registry

    Science.gov (United States)

    Agus, Sam; Benecke, Heike; Thum, Cornelia; Strupp, Michael

    2013-01-01

    Introduction: Despite being a common disease, data on vertigo management in a real-world setting are scarce. Aims: To provide information on the vertigo and its management in a real-world setting. Methods: Data were collected from 4,294 patients with vertigo in 13 countries over 28 months via a multi-national, non-interventional observational study (the so-called REVERT registry). Data included medical history and details of anti-vertigo therapy. “Clinical global impression” (CGI) of severity (CGI-S) was assessed at baseline (V1) and then at 6 months follow-up (V2) along with CGI change (CGI-C). All variables were analyzed descriptively. Results: The majority of patients were female, >40 years of age, and almost half had co-morbid cardio-vascular disease. Diagnoses were split into four categories: 37.2% “other vertigo of peripheral vestibular origin,” 26.9% benign paroxysmal positional vertigo (BPPV), 20.5% “peripheral vestibular vertigo of unknown origin,” and 15.4% Ménière’s disease (MD). Betahistine was the most commonly prescribed therapy prior to and after enrollment, and was followed by piracetam, ginkgo biloba, and diuretics. MD had the highest proportion of betahistine treated patients. Almost half of patients were “moderately ill” at V1 based on CGI-S. At V2, patient distribution moved toward “less severe illness” (91.0% improved). The greatest improvements were in the more severely ill, and those with BPPV or “other vertigo of peripheral origin.” Conclusion: There was a reduction in illness severity over the course of the study, some of which is likely to be due to pharmacological intervention. Further studies are needed to confirm these results. PMID:23675366

  19. Clinical and demographic features of vertigo: findings from the REVERT registry

    Directory of Open Access Journals (Sweden)

    Sam eAgus

    2013-05-01

    Full Text Available IntroductionDespite being a common disease, data on vertigo management in a real-world setting are scarce. AimsTo provide information on the vertigo and its management in a real-world setting.Materials and MethodsData were collected from 4,294 patients with vertigo in 13 countries over 28 months via a multi-national, non-interventional observational study (the so-called REVERT registry. Data included medical history and details of anti-vertigo therapy. ‘Clinical global impression’ (CGI of severity (CGI-S was assessed at baseline (V1 and then at 6 months follow-up (V2 along with CGI change (CGI-C. All variables were analysed descriptively. ResultsThe majority of patients were female, >40 years of age, and almost half had co-morbid cardiovascular disease. Diagnoses were split into 4 categories: 37.2% ‘other vertigo of peripheral vestibular origin’, 26.9% benign paroxysmal positional vertigo (BPPV, 20.5% ‘peripheral vestibular vertigo of unknown origin’ and 15.4% Menière’s disease (MD. Betahistine was the most commonly prescribed therapy prior to and after enrolment, and was followed by piracetam, ginkgo biloba and diuretics. MD had the highest proportion of betahistine treated patients. Almost half of patients were ‘moderately ill’ at V1 based on CGI-S. At V2, patient distribution moved towards ‘less severe illness’ (91.0% improved.The greatest improvements were in the more severely ill, and those with BPPV or ‘other vertigo of peripheral origin’. ConclusionsThere was a reduction in illness severity over the course of the study, some of which is likely to be due to pharmacological intervention. Further studies are needed to confirm these results.

  20. [National registry of home enteral nutrition in Spain 2007].

    Science.gov (United States)

    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

    2009-01-01

    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.

  1. Interventional MRI

    Energy Technology Data Exchange (ETDEWEB)

    Fukatsu, Hiroshi [Nagoya Univ. (Japan). School of Medicine

    2002-01-01

    MR guided interventional procedures have become useful clinical tools recently. In this article the authors discuss the usefulness and problems of MR-guided needle biopsy and MR-guided laser induced thermotherapy (LITT) for clinical cases. MR enabled optimal plane monitoring with desired image contrast during the procedure without X-ray irradiation for puncture and tissue sampling. Also only MR could non-invasively provide interstitial temperature information during laser ablation. Bone and soft tissue lesions are likely to be candidates for MR interventions because they are free from any physiological motions, and radiologists should compare MR-guidance with CT- or US guidance for individual cases in order to achieve a less invasive diagnosis or treatment. (author)

  2. Validation and analysis of a multi-site MIS Prospective Registry through sub-analysis of an MIS TLIF Subgroup.

    Science.gov (United States)

    Sclafani, Joseph A; Raiszadeh, Kamshad; Raiszadeh, Ramin; Kim, Paul; Doerr, Todd; Siddiqi, Farhan; LaMotta, Ivan; Park, Paul; Templin, Cary; Gill, Sandeep; Liang, Kevin; Kim, Choll W

    2014-01-01

    that had reached the one year postoperative time point were 46.5 pre-op (n = 46), and 26.2 at 1 year post-op (n = 40, p = 0.0001). There was significant improvement in VAS scores: pre-operative (back = 6.7, leg = 5.4, n = 46), and 1 year post-operative (back = 3.2, leg = 1.7, n = 40, p = 0.0001). Patients with pre-operative ODI scores greater than 50 demonstrated significant improvement starting at the 6 week post-operative time point (24 point improvement, n = 46, p post-op (n = 20). Initial findings of the MIS Prospective Registry show patients can be enrolled in a relatively short time period and patient based questionnaires can successfully be obtained through a combination of clinic follow-up appointments and remote correspondence. Outcomes of the MIS Registry MIS TLIF subgroup were consistent with previously published MIS TLIF studies. Sub-analysis of data collected through level-specific patient diagnosis and treatment modalities permits outcome analysis of a wide breadth of spinal conditions and interventions.

  3. Spinal interventions.

    Science.gov (United States)

    Ruiz Santiago, F; Filippiadis, D K; Guzmán Álvarez, L; Martínez Martínez, A; Castellano, M M

    2016-04-01

    We review the state of the art in imaging-guided percutaneous interventional procedures used to diagnose and/or treat the diverse causes of back pain. These procedures can be used for diagnosis, treatment, or both. They are focused on the vertebral bodies, the facet joints, the intervertebral discs, and the nerve structures. Copyright © 2015 SERAM. Published by Elsevier España, S.L.U. All rights reserved.

  4. [Monitoring of pregnancies exposed to drugs in France: the experience of the registries of congenital malformations].

    Science.gov (United States)

    Doray, Bérénice

    2014-01-01

    Registries of congenital malformations were implemented in many industrialized countries following the drama of thalidomide. In 2013, four French registries of congenital malformations in France provide the systematic epidemiological surveillance of birth defects. All are part of international networks of registries, especially European surveillance of congenital anomalies (EUROCAT). If the development of prevention actions including prenatal diagnosis has gradually led the registries to play a key role of assessment on the impact of public health policies, one of the major roles of registries of congenital malformations remains early detection of clusters of malformations secondary to teratogenic effects. © 2014 Société Française de Pharmacologie et de Thérapeutique.

  5. The Cerebral Palsy Research Registry: Development and Progress Toward National Collaboration in the United States

    Science.gov (United States)

    Hurley, Donna S.; Sukal-Moulton, Theresa; Msall, Michael E.; Gaebler-Spira, Deborah; Krosschell, Kristin J.; Dewald, Julius P.

    2011-01-01

    Cerebral palsy is the most common neurodevelopmental motor disability in children. The condition requires medical, educational, social, and rehabilitative resources throughout the life span. Several countries have developed population-based registries that serve the purpose of prospective longitudinal collection of etiologic, demographic, and functional severity. The United States has not created a comprehensive program to develop such a registry. Barriers have been large population size, poor interinstitution collaboration, and decentralized medical and social systems. The Cerebral Palsy Research Registry was created to fill the gap between population and clinical-based cerebral palsy registries and promote research in the field. This is accomplished by connecting persons with cerebral palsy, as well as their families, to a network of regional researchers. This article describes the development of an expandable cerebral palsy research registry, its current status, and the potential it has to affect families and persons with cerebral palsy in the United States and abroad. PMID:21677201

  6. A need for national registries and international collaborative research in multiple sclerosis.

    Science.gov (United States)

    Myhr, K M; Grytten, N; Torkildsen, Ø; Wergeland, S; Bø, L; Pugliatti, M; Aarseth, J H

    2012-01-01

    There is a growing need to identify biomarkers for early diagnosis and treatment in multiple sclerosis (MS). Such markers may also be involved in the cause and pathogenesis of the disease. Established national MS registries have through several decades allowed data collection to facilitate MS research. The European MS Registry (EUReMS) is a recent international collaborative effort to ultimately promote MS research and quality in health care across European countries. International collaborations based on such initiatives can facilitate studies on new biomarkers in MS. Important studies on data from MS registries, as well as national- and international collaboration networks have been conducted. The symposium "National MS Registries--to improve health care and research in Multiple Sclerosis" held in Bergen, Norway, earlier this year aimed to highlight the need and benefit from national MS registries and promote international collaborative research in MS. © 2012 John Wiley & Sons A/S.

  7. Prognostic Value of Hypoalbuminemia After Transcatheter Aortic Valve Implantation (from the Japanese Multicenter OCEAN-TAVI Registry).

    Science.gov (United States)

    Yamamoto, Masanori; Shimura, Tetsuro; Kano, Seiji; Kagase, Ai; Kodama, Atsuko; Sago, Mitsuru; Tsunaki, Tatsuya; Koyama, Yutaka; Tada, Norio; Yamanaka, Futoshi; Naganuma, Toru; Araki, Motoharu; Shirai, Shinichi; Watanabe, Yusuke; Hayashida, Kentaro

    2017-03-01

    Hypoalbuminemia, a frailty criterion, belongs to a group of co-morbidities not captured as a traditional risk factor. We assessed its prognostic value in patients who underwent transcatheter aortic valve implantation (TAVI). The study included 1,215 consecutive patients from the Optimized Catheter Valvular Intervention -TAVI Japanese multicenter registry. Hypoalbuminemia was defined as serum albumin level 3.5 g/dl (nonhypo[nh]-ALB group, n = 931). Several baseline characteristics differed significantly between both groups, including age (85.1 ± 5.1 vs 84.2 ± 4.9 years, p = 0.012), ejection fraction (58.5 ± 14.3% vs 62.9 ± 12.4%, p stratification before TAVI. Copyright © 2016 Elsevier Inc. All rights reserved.

  8. Psychological Distress in Parents and School-Functioning of Adolescents: Results from the World Trade Center Registry.

    Science.gov (United States)

    Gargano, Lisa M; Dechen, Tenzin; Cone, James E; Stellman, Steven D; Brackbill, Robert M

    2017-10-01

    Poor school-functioning can be indicative of parent and adolescent mental health and adolescent behavior problems. This study examined 472 adolescents enrolled in the World Trade Center (WTC) Health Registry, with a two-step path analysis, using regression-based models, to unravel the relationships between parent and adolescent mental health, adolescent behavior problems, and adolescent unmet healthcare need (UHCN) on the outcome school-functioning. WTC exposure was associated with UHCN and parental mental health was a significant mediator. There was no evidence that family WTC exposure was associated with UHCN independent of its effect on parental mental health. For the second path, after accounting for the effects of adolescent mental health, behavioral problems, and UHCN, there remained a significant association between parental mental health and school-functioning. Interventions for poor school-functioning should have multiple components which address UHCN, mental health, and behavioral problems, as efforts to address any of these alone may not be sufficient.

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

    Science.gov (United States)

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

    2015-09-01

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

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

    Science.gov (United States)

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

    2016-06-01

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

  11. Infection burden in total hip and knee arthroplasties: an international registry-based perspective.

    Science.gov (United States)

    Springer, Bryan D; Cahue, September; Etkin, Caryn D; Lewallen, David G; McGrory, Brian J

    2017-06-01

    Infection remains a leading cause of failure of hip and knee replacements. Infection burden is the ratio of implants revised for infection to the total number of arthroplasties in a specific period, measuring the steady state of infection in a registry. We hypothesized infection burden would be similar among arthroplasty registries. We evaluated publicly reported data from 6 arthroplasty registries (Australian Orthopaedic Association National Joint Replacement Registry [AOANJRR], New Zealand Joint Registry, Swedish Hip Arthroplasty Register, Swedish Knee Arthroplasty Register, National Joint Registry of England, Wales, Northern Ireland, and the Isle of Man, and the American Joint Replacement Registry) for revisions performed with an infection diagnosis over the last 6 years. The 2015 hip infection burden varied between registries from 0.76% (AOANJRR) to 1.24% (Swedish Hip Arthroplasty Register), and the unweighted overall average for hip infection burden was 0.97%. In 2012, 2013, and 2014, average hip infection burden held steady at 0.87%, 0.93%, and 0.94%, respectively, higher than the preceding 2 years. The 2015 knee infection burden varied from 0.88% (AOANJRR) to 1.28% (Swedish Knee Arthroplasty Register), and the unweighted average was 1.03%. In 2012, 2013, and 2014, knee infection burden was 1.04%, 1.11%, and 1.02%, respectively. These numbers were also higher than the preceding 2 years. Infection burden may be one measure of the overall success in registry populations as well as monitoring the steady state of infection worldwide. Despite global efforts to reduce postoperative infection, infection burden has actually increased in the selected registries over time.

  12. Establishment of the Pediatric Obesity Weight Evaluation Registry: A National Research Collaborative for Identifying the Optimal Assessment and Treatment of Pediatric Obesity.

    Science.gov (United States)

    Kirk, Shelley; Armstrong, Sarah; King, Eileen; Trapp, Christine; Grow, Mollie; Tucker, Jared; Joseph, Madeline; Liu, Lenna; Weedn, Ashley; Sweeney, Brooke; Fox, Claudia; Fathima, Samreen; Williams, Ronald; Kim, Roy; Stratbucker, William

    2017-02-01

    Prospective patient registries have been successfully utilized in several disease states with a goal of improving treatment approaches through multi-institutional collaboration. The prevalence of youth with severe obesity is at a historic high in the United States, yet evidence to guide effective weight management is limited. The Pediatric Obesity Weight Evaluation Registry (POWER) was established in 2013 to identify and promote effective intervention strategies for pediatric obesity. Sites in POWER provide multicomponent pediatric weight management (PWM) care for youth with obesity and collect a defined set of demographic and clinical parameters, which they regularly submit to the POWER Data Coordinating Center. A program profile survey was completed by sites to describe characteristics of the respective PWM programs. From January 2014 through December 2015, 26 US sites were enrolled in POWER and had submitted data on 3643 youth with obesity. Ninety-five percent were 6-18 years of age, 54% female, 32% nonwhite, 32% Hispanic, and 59% publicly insured. Over two-thirds had severe obesity. All sites included a medical provider and used weight status in their referral criteria. Other program characteristics varied widely between sites. POWER is an established national registry representing a diverse sample of youth with obesity participating in multicomponent PWM programs across the United States. Using high-quality data collection and a collaborative research infrastructure, POWER aims to contribute to the development of evidence-based guidelines for multicomponent PWM programs.

  13. Do workplace interventions reduce disability rates?

    Science.gov (United States)

    Midtsundstad, T I; Nielsen, R A

    2016-12-01

    Increasing life expectancy and decreasing fertility have led to a shift in the workforce age structure towards older age groups. Deteriorating health and reduced work capacity are among the challenges to retaining older workers in the labour force. To examine whether workplace interventions to facilitate work among employees with health problems or reduced work capacity affect disability rates among employees aged 50 years and older. Data from a survey of Norwegian companies (n = 713) were linked with registry data on their employees aged 50-61 years (n = 30771). By means of a difference-in-differences approach, we compared change in likelihood of receiving a full disability pension among employees in companies with and without workplace interventions. Employees in companies reporting to have workplace interventions in 2005 had a higher risk of receiving full disability pension during the period 2001-03 compared with employees in companies without such interventions [odds ratio (OR) 1.25, 95% confidence interval (CI) 1.07-1.45]. During the period 2005-07, there was an overall reduction in disability rates (OR 0.83, 95% CI 0.71-0.96) in both the intervention and control group. However, employees in companies reporting to have interventions in 2005 experienced an additional reduction in an employee's likelihood of receiving a full disability pension (OR 0.80, 95% CI 0.64-0.99) compared with employees in companies without interventions. Interventions to facilitate work among employees with health problems or reduced work capacity have reduced disability rates among employees aged 50-61. This suggests that companies' preventive interventions are an effective means to retain older workers with deteriorating health. © The Author 2016. Published by Oxford University Press on behalf of the Society of Occupational Medicine. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

  14. Registries in European post-marketing surveillance: a retrospective analysis of centrally approved products, 2005-2013.

    Science.gov (United States)

    Bouvy, Jacoline C; Blake, Kevin; Slattery, Jim; De Bruin, Marie L; Arlett, Peter; Kurz, Xavier

    2017-12-01

    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 at gaining further insight into the European Medicines Agency's (EMA) requests for new registries and registry studies using existing registries and to review the experience gained in their conduct. European Public Assessment Reports were consulted to identify products for which a request 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 collected from EMA electronic record keeping systems. Of 392 products that received a positive Committee for Medicinal Products for Human Use opinion during 2005-2013, 31 registries were requested for 30 products in total. Sixty-five percent were product registries whereas 35% were disease registries and 71% of the registries had a primary safety objective. Most commonly reported issues with registries were delayed time to start and low patient accrual rates. The delays found in getting new registries up and running support the need to improve the timeliness of data collection 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 for the post-authorisation benefit-risk monitoring of medicinal products. © 2017 Commonwealth of Australia. Pharmacoepidemiology & Drug Safety © 2017 John Wiley & Sons, Ltd. © 2017 Commonwealth of Australia. Pharmacoepidemiology

  15. Interventional Oncology.

    Science.gov (United States)

    Culp, William T N

    2016-05-01

    The approach to the treatment of cancer in veterinary patients is constantly evolving. Whenever possible and practical, surgery is pursued because it provides the greatest opportunity for tumor control and may result in a cure. Other cancer treatments, such as chemotherapy and radiation therapy, are commonplace in veterinary medicine, and the data outlining treatment regimens are growing rapidly. An absence of treatment options for veterinary cancer patients, however, has historically existed for some tumors. Interventional oncology options have opened the door to the potential for better therapeutic response and improved patient quality of life. Copyright © 2016 Elsevier Inc. All rights reserved.

  16. An observational postmarketing safety registry of patients in the UK, Germany, and Switzerland, who have been prescribed Sativex® (THC:CBD, nabiximols oromucosal spray

    Directory of Open Access Journals (Sweden)

    Etges T

    2016-11-01

    Full Text Available Tilden Etges, Kari Karolia, Thomas Grint, Adam Taylor, Heather Lauder, Brian Daka, Stephen Wright GW Pharmaceuticals, Cambridge, UK Abstract: The global exposure of Sativex® (Δ9-tetrahydrocannabinol [THC]:cannabidiol [CBD], nabiximols is estimated to be above 45,000 patient-years since it was given marketing approval for treating treatment-resistant spasticity in multiple sclerosis (MS. An observational registry to collect safety data from patients receiving THC:CBD was set up following its approval in the UK, Germany, and Switzerland, with the aim of determining its long-term safety in clinical practice. Twice a year, the Registry was opened to prescribing physicians to voluntarily report data on patients’ use of THC:CBD, clinically significant adverse events (AEs, and special interest events. The Registry contains data from 941 patients with 2,213.98 patient-years of exposure. Within this cohort, 60% were reported as continuing treatment, while 83% were reported as benefiting from the treatment. Thirty-two percent of patients stopped treatment, with approximately one third citing lack of effectiveness and one quarter citing AEs. Psychiatric AEs of clinical significance were reported in 6% of the patients, 6% reported falls requiring medical attention, and suicidality was reported in 2%. Driving ability was reported to have worsened in 2% of patients, but improved in 7%. AEs were more common during the first month of treatment. The most common treatment-related AEs included dizziness (2.3% and fatigue (1.7%. There were no signals to indicate abuse, diversion, or dependence. The long-term risk profile from the Registry is consistent with the known (labeled safety profile of THC:CBD, and therefore supports it being a well-tolerated and beneficial medication for the treatment of MS spasticity. No evidence of new long-term safety concerns has emerged. Keywords: cannabidiol, tetrahydrocannabinol, non-interventional, multiple sclerosis

  17. Demographic, clinical and antibody characteristics of patients with digital ulcers in systemic sclerosis: data from the DUO Registry

    NARCIS (Netherlands)

    Denton, Christopher P.; Krieg, Thomas; Guillevin, Loic; Schwierin, Barbara; Rosenberg, Daniel; Silkey, Mariabeth; Zultak, Maurice; Matucci-Cerinic, Marco; Stetter, M.; Lackner, K.; Tomi, N.; Hafner, F.; Brodmann, M.; Kuen-Spiegel, M.; Kolle, H.; Raffier, B.; Hamberger, N.; Metz, S.; Siebel, C.; Trummer, M.; Thonhofer, R.; Illmer, X.; Trautinger, F.; Schmidt, P.; Rintelen, B.; Sautner, J.; Willfort-Ehringer, A.; Margeta, C.; Monshi, B.; Pirkhammer, D.; Richter, L.; Holzer, G.; Minmair, G.; Broll, H.; Takacs, M.; Hirschl, M.; Mesaric, P.; Feldmann, R.; Semmelweis, K.; Hundstorfer, M.; Reinhart, V.; Maurer, B.; Verner, D.; Distler, O.; Schmidt-Bosshard, R.; Bohmova, J.; Prochazkova, L.; Nemec, P.; Fojtik, Z.; Soukup, T.; Smrzova, A.; Suchy, D.; Zemanova, I.; Becvar, R.; Gawlik, A.; Koch, M.; Rauen, T.; Voss, B.; Kurthen, R.; Unholzer, A.; Starz, H.; Welzel, J.; Plaumann, K.; Merk, B.; Bloching, H. H.; Moosig, F.; Frey, P.; Kahl, S.; Schleenbecker, H.; Storck-Mueller, K.; Schwarting, A.; Hazenbiller, A.; Nichelmann, V.; Flaig, W.; Rumbaur, C.; Boesenberg, I.; Schmeiser, T.; Marx, J.; Mayer, L.; Stein, T.; Ochs, W.; Rasche, C.; Worm, M.; Riemekasten, G.; Deuschle, K.; Becker, M.; Kleiner, H. J.; Schulze, K.; Tiggers, C.; Peters, J.; Kirschke, J.; Schaefer, C.; Monshausen, M.; Mengden, T.; Sadeghlar, F.; Seidel, M.; Hillebrecht, C.; Andresen, J.; Reemtsen, R.; Stoeckl, F.; Sperling, S.; Podda, M.; Wagner, N.; Guenzel, J.; Wuerzburg, I.; Luethke, K.; Enderlein, M.; Kayser, M.; Gerber, A.; Haust, M.; Hoff, N. P.; Mota, R.; Akanay-Diesel, S.; Jahnke, K.; Mettler, S.; Toeller, S.; Zwenger, S.; Klein, E.; Hahn, K.; Beyer, C.; Distler, J.; Katzemich, A.; Erfurt-berge, C.; Sticherling, M.; Schuch, F.; Rapp, P.; Mitchell, A.; Freundlieb, C.; Rushentsova, U.; Himsel, A.; Henkemeier, U.; Eilbacher, P.; Ullrich-Guenther, C.; Neul, S.; Oelsner, M.; Hermanns, G.; Fiene, M.; Gause, A.; Mensing, C.; Klings, D.; Mensing, H.; Messall, J.; Zuper, R.; May, D.; Bruckner, L.; Sheikh, N.; Aries, P.; Kirchberg, S.; Funkert, A.; Blank, N.; Lupaschko, S.; Schwuerzer-Voit, M.; Meier, L.; Herr, U.; Meier, U.; Neek, G.; Wernitzsch, H.; Pfoehler, C.; Assmann, G.; Vosswinkel, J.; Krog, B.; Wollersdorfer, E.; Oltmann-Schroeder, J.; Zeuner, R.; Uhlig, S.; Barth, S.; Huegel, R.; Glaeser, R.; Rabe, B.; Schuster, J.; Scholz, J.; Kremer, K.; Robakidze-Torbahn, M.; Moinzadeh, P.; Mittag, M.; Dohse, A.; Muhlack, A.; Schultz, L.; Schult, S.; Frambach, Y.; Kettenbach, A.; Fell, I.; Schweda, K.; Steinbrink, K.; Podobinska, M.; Harmuth, W.; Nielen, C.; Kaczmarczyk, A.; Kellner, C.; von Oelhafen, J.; von Bildering, P. B.; Kunze, S.; Niedermeier, A.; Messer, G.; Sardy, M.; Bekou, V.; Belloni, B.; Huettig, B.; Ziai, M.; Hein, R.; Hallecker, A.; Gaubitz, M.; Hallermann, C.; Schmidt, K.; Herrgott, I.; Hildebrandt, B.; Eiden, E.; Guertler, I.; Gernot Scheibl, E.; Brand, H.; Kaeding, U.; Weiss, E.; Reischel, N.; Kern, S.; Baumann, C.; Hellmich, B.; Loeffler, C.; Pflugfelder, J.; Karaenke, P.; Ruchenburg, J.; Blume, J.; Zabel, M.; Deppermann, N.; Chromik, S.; Metzler, C.; Krupp, E.; Rumpel, H.; Krause Rostock, J.-O.; Kneitz, C.; Federow, I.; Schneider, K.; Semmler, M.; Hapke, S.; Barnd, A.; Linke, M.; Kampe-Juzak, E.; Knoebel, K.; Niefanger, K.; Wilhelm, H. U.; Lauterwein, B.; Fierlbeck, G.; Schanz, S.; Pfeiffer, C.; Hassel, R.; Wahn, H.; Schildt, K.; von Elling, A.; Boro, D.; Ebel, J.; Ahmadi, K.; Moritz, D.; Dietl, S.; Dyballa, J.; Alsheimer, B.; Schuetz, N.; Schuart, T.; Mueglich, C.; Tony, H. P.; Marina, P.; Deininger, F.; Hartmann, F.; Olsen, A. B.; Sondergaard, K. H.; Naderi, Y.; Iversen, L. V.; Karlsmark, T.; Knudsen, J. B.; Gil, J. G.; Lopez, J. C. F.; Tasende, J. A. P.; Gonzales, M. F.; Sandoval, A. A.; del Carmen Torres Martin, M.; Corteguera, M.; Barca, B. A.; Montes, I. C.; de la Torre, R. G.; Victoria Egurbide, M.; Pros, A.; Munoz, J.; Simeon, C. P.; Espinosa, G.; Espinposa, G.; Rodriguez, M. A. P.; Castellvi, I.; Mascaro, J. M.; Bellido, D.; Manzanedo, V. S.; Huertas, M. P.; Sanchez, M. D. M.; Trenado, M. S. S.; Garcia, P. V.; Gines Martinez, F.; Angeles Aquirre, M.; del Rio, A. H.; Vazquez, J. L. G.; Coleman, J. V.; Lopez, M. R.; Sanchez, P. S.; Aizpuru, E. M. F.; Mateo, F. J. N.; Callejas, J. L.; Ortego, N.; Santo, M. P.; Rubio, M.; Martin, I.; Cruz, A.; Crespo, M.; Ramos, P. C.; Fernandez, A. S.-A.; Filloy, J. A. M.; Rodriguez, T. R. V.; Marhuenda, A. R.; Blanco, J. J. R.; Hernan, M. G. B.; Mendoza, A. Z.; de la Puente, C.; Rabaneda, E. V.; de Vicuna, R. G.; del Mar Ripoll Macias, M.; del la Pena Lefebvre, P. G.; de Ramon, E.; Camps, M. T.; Fernandez, C.; Miguelez, R.; Uson, J.; Delgado, E. G.; Villaverde, V.; Maceiras, F.; Cruz, J.; Mosquera, J. A.; Mera, A.; Pampin, E. P.; Blanco, J. S.; Maneiro, J. R.; Diaz, J. J.; Losada, L.; Caamano, M.; Fernandez, S.; Insua, S. A.; Laurin, C. U.; Sanchez, J.; Fernandez, N. C.; Becerra, N. D.; Garcia, A.; Nicolas, G. M.; del Carmen Ortega de la O, M.; Rueda, A.; Calvo, J.; Roman Ivorra, J.; Sancho Alegre, J. J.; Barbado, J.; Montes, J.; Saez, L.; Kaarto, A.; Makinen, H.; Madaule, S.; Dadban, A.; Lok, C.; Ferrandiz, D.; Moiton, M. P.; Magy-Bertrand, N.; Taieb, A.; Droitcourt, C.; Belin, E.; Balquiere, S.; Prey, S.; Boulon, C.; Constans, J.; Richez, C.; Sassolas, B.; Misery, L.; Greco, M.; collet, E.; Berthier, S.; Leguy-Seguin, V.; Imbert, B.; Carpentier, P.; Blaise, S.; Maillard, H.; Beneton, N.; Launay, D.; Hachulla, E.; Woijtasik, G.; Charlanne, H.; Lambert, M.; Jourdain, N.; Hatron, P. Y.; Morell, S.; Spars, A.; Couraud, A.; Doeffel-hantz, V.; Fauchais, A. L.; Vidal, E.; Goudran, G.; Bezanahary, H.; Boussely, N.; Manea, P.; Dumonteil, S.; Loustaud-ratti, V.; Hot, A.; Coppere, B.; Desmurs-Clavel, H.; Ninet, J.; Girard-Madoux, M. H.; Granel, B.; Keynote, A.; Khau van Kien, A.; Rullier, P.; Le Quellec, A.; Riviere, S.; Bessis, D.; Cohen, J. D.; Farcas, C.; Granel-brocard, F.; Agard, C.; Durant, C.; Fuzibet, J. G.; Queyrel, V.; Berezne, A.; Guillevin, L.; Mouthon, L.; Frances, C.; Toledano, C.; Cabane, J.; Tiev, K.; Farge, D.; Keshtmand, H.; Lazareth, I.; Priollet, P.; Michon-Pasturel, U.; Wipff, J.; Assous, N.; Cartry, O.; Kostrzwewa, E.; Doutre, M. S.; Blum, L.; Reguiai, Z.; Letremy, A.; Perlat, A.; Cazalets-lacoste, C.; Decaux, O.; Jego, P.; Duval-modeste, A. B.; Deboves, O.; Sordet, C.; Chatelus, E.; Chiffot, H.; Sibillia, J.; Couret, B.; Moulis, G.; Sailler, L.; Adoue, D.; Gaches, F.; Diot, E.; Skowron, F.; Zenone, T.; Quemeneur, T.; Kyndt, X.; Wahl, D.; Zuily, S.; Moline, T.; Bravetti, V.; Galanopoulos, N.; Vasilopoulos, D.; Vlachoyannopoulos, P.; Kritikos, I.; Tsifetaki, N.; Koutroumbas, A.; Garyfallos, A.; Athanassiou, P.; Aslanidis, S.; Kamali, S.; Dimitroulas, T.; Galanopoulo, V.; Elezoglou, A.; Grier, A.; Murray, M.; O'Rourke, M.; Gabrielli, A.; Lapadula, G.; Serafino, L.; Terlizzi, N.; Bellissimo, S.; Stisi, S.; Malavolta, N.; Airo, P.; Vacca, A.; Battaglia, E.; Foti, R.; Mazzuca, S.; Bortoluzzi, A.; Trotta, F.; Galluccio, F.; Marucci, A.; Cantatore, F.; Bucci, R.; Puppo, F.; de Angeli, R.; Grassi, W.; Cipriani, P.; Mazzone, A.; Faggioli, P.; Severino, A.; Scorza, R.; Belloli, L.; Ughi, N.; Antivalle, M.; del Papa, N.; Maglione, W.; Zeni, S.; Ferri, C.; Colaci, M.; Varcasia, G.; Cuomo, G.; Cozzi, F.; Triolo, G.; Gatti, S.; Montecucco, C. M.; Doveri, M.; Nigro, A.; Olivieri, I.; Bajoochi, G.; Rosato, E.; Salsano, F.; Faustini, F.; Ferraccioli, G.; Colonna, L.; Pallotta, S.; Riccieri, V.; Mussi, A.; Bellisai, F.; Galeazzi, M.; Fusaro, E.; Saracco, M.; Pellerito, R.; Masolini, P.; de Vita, S.; Lombardi, S.; Lunardi, C.; Moolenburgh, J. D.; Heurkens, A. H. M.; Voskuyl, A.; Hak, A. E.; Stroes, E. S. K.; Remans, J.; Gerdes, V.; van Woerkom, J. M.; de Long, A. J. L.; Kaasjager, H. A. H.; Visser, H.; Janssen, M.; van Guldener, C.; van Neer, F.; Vos, P.; Peters, A. J.; Hulsmans, H.; Ronday, K.; Goekoop, R.; Ewals, J.; Valentijn, R.; de Bois, M.; Westedt, M. L.; Siewertsz van Reesema, D.; Knifjj-Dutmer, E.; Stolk, J. N.; Willems, H.; Kuiper-geertsma, D. G.; Baudaoin, P.; Fretter, P.; Westra, R.; Sonnaville, P. B. J.; Smit, A.; Bootsma, H.; Brouwer, L.; Bijl, M.; Molders, N.; Lebrun, C.; van der Veen, M. J.; Noordzij, M.; Houben, H.; Landewe, R. M. B.; Vercoutere, W.; Jahangier de Veen, Z. N.; Zijlstra, T. R.; Ubels, F.; Bruyn, G.; Jansen, P.; Schuerwegh, A.; Huizinga, T. W. J.; Paassen, P.; Hurkens, T.; Geurts, M.; van den Hoogen, F.; Vonk, M.; Jacobs, P. J. C.; Groenendael, J. H. L. M.; Seys, P.; van Zeben, D.; van Paassen, H.; Groenendael, J.; Han, K. H.; Wlarvens, M.; van Hagen, M.; van Daele, P.; Dolhain, R.; Gerards, A. H.; van der Lubbe, P.; Kanter, M. D. E.; Muller, W. H.; Ton, E.; van Krugten, M.; van Gameren, I.; Lanting, P.; den Hengst, C.; Gjessdal, C. G.; Hjertaker, S. L.; Madland, T. M.; Bendvold, A.; Bitter, H.; Hoffmann-Vold, A. M.; Midtvedt, O.; Bakland, G.; Aslkaksen, H. K.; Seip, M.; Kalstad, S.; Koldingsnes, W.; Grandauent, B.; Nordvag, B. Y.; Stran, E. K.; Skomsvoll, J.; Andersen, M.; Thomsen, R. S.; Pedersen, T.; Bakkeheim, V.; Cordeiro, A.; Alves, J.; Oliveira, S.; Coelho, P.; Resende, C.; Ponte, C.; Almeida, I.; Silva, I.; Santos, C.; Camara, I.; Costa, J.; Hellstrom, H.; Mohammad, A.; Lind, I.; Lind, K.; Bracin, T.; Liljequist, E.; Vingren, T.; Ostenson, A.; Hermansson, E.; Thorsson, C.; Soderlin, M.; Nordin, A.; Waldheim, E.; Vengemyr, K.; Albertsson, K.; Karlsson, M. L.; Rydvald, Y.; Rizk, M.; Dolnicar, A. S.; Lukac, J.; James, J.; McHugh, N.; Cole, S.; Brown, S.; Hamilton, A.; Faizal, A.; Hall, F.; Murphy, K.; Skingle, S.; Harris, H.; Madhok, F.; Hampson, R.; Baguley, E.; Ogunbambi G, O.; Lamb, J.; Anderson, M.; Moots, R.; White-Alao, B.; Morrison, C.; Dobson, J.; Gordon, P.; Salerno, R.; Denton, C.; Parker, L.; Ochiel, R.; Vincent, R.; Zimba, S.; Ngcozana, T.; Xu, Y.; D'Cruz, D.; Choong, L. M.; Herrick, A.; Wragg, E.; Manning, J.; Moore, T.; Kelsey, C.; Chakravarty, K.; Skyes, H.; Athiveer, P.

    2012-01-01

    The Digital Ulcers Outcome (DUO) Registry was designed to describe the clinical and antibody characteristics, disease course and outcomes of patients with digital ulcers associated with systemic sclerosis (SSc). The DUO Registry is a European, prospective, multicentre, observational, registry of SSc

  18. Application of a Causal Discovery Algorithm to the Analysis of Arthroplasty Registry Data.

    Science.gov (United States)

    Cheek, Camden; Zheng, Huiyong; Hallstrom, Brian R; Hughes, Richard E

    2018-01-01

    Improving the quality of care for hip arthroplasty (replacement) patients requires the systematic evaluation of clinical performance of implants and the identification of "outlier" devices that have an especially high risk of reoperation ("revision"). Postmarket surveillance of arthroplasty implants, which rests on the analysis of large patient registries, has been effective in identifying outlier implants such as the ASR metal-on-metal hip resurfacing device that was recalled. Although identifying an implant as an outlier implies a causal relationship between the implant and revision risk, traditional signal detection methods use classical biostatistical methods. The field of probabilistic graphical modeling of causal relationships has developed tools for rigorous analysis of causal relationships in observational data. The purpose of this study was to evaluate one causal discovery algorithm (PC) to determine its suitability for hip arthroplasty implant signal detection. Simulated data were generated using distributions of patient and implant characteristics, and causal discovery was performed using the TETRAD software package. Two sizes of registries were simulated: (1) a statewide registry in Michigan and (2) a nationwide registry in the United Kingdom. The results showed that the algorithm performed better for the simulation of a large national registry. The conclusion is that the causal discovery algorithm used in this study may be a useful tool for implant signal detection for large arthroplasty registries; regional registries may only be able to only detect implants that perform especially poorly.

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

    Science.gov (United States)

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

    2013-06-01

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

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

    Directory of Open Access Journals (Sweden)

    E. L. Nasonov

    2016-01-01

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

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

    Science.gov (United States)

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

    2014-01-01

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

  2. Brazilian Clinical Trials Registry and the challenges for clinical research governance.

    Science.gov (United States)

    Laguardia, Josué; Piolli, Alessandro Luís; Prevot, Margareth; Ramalho, Luciano; Gamarski, Ricardo; Nishizawa, Claudio

    2011-01-01

    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.

  3. Paper 3: EUROCAT data quality indicators for population-based registries of congenital anomalies.

    Science.gov (United States)

    Loane, Maria; Dolk, Helen; Garne, Ester; Greenlees, Ruth

    2011-03-01

    The European Surveillance of Congenital Anomalies (EUROCAT) network of population-based congenital anomaly registries is an important source of epidemiologic information on congenital anomalies in Europe covering live births, fetal deaths from 20 weeks gestation, and terminations of pregnancy for fetal anomaly. EUROCAT's policy is to strive for high-quality data, while ensuring consistency and transparency across all member registries. A set of 30 data quality indicators (DQIs) was developed to assess five key elements of data quality: completeness of case ascertainment, accuracy of diagnosis, 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 for 2004-2008. This information is also available on the EUROCAT website for previous years. The EUROCAT DQIs allow registries to evaluate their performance in relation to other registries and allows appropriate interpretations to be made of the data collected. The DQIs provide direction for improving data 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 collected can make a substantial and useful contribution to epidemiologic research on congenital anomalies. Copyright © 2011 Wiley-Liss, Inc.

  4. Multifaceted medication adherence intervention for patients with hypertension in secondary care

    DEFF Research Database (Denmark)

    Hedegaard, Ulla; Hallas, Jesper; Nielsen, Lene Ravn-Vestergaard

    study was to describe the content and process outcomes of an adherence program developed for hypertensive patients in a hospital setting. Methods The intervention development was based on adherence and behavioral theories, and evidence of effective interventions. The intervention was pharmacist...... action (60%) and was exercised in 94% of the patients. All participants gave informed consent and the study was approved by The Regional Scientific Ethical Committee for Southern Denmark and the Danish Registry Board Conclusions A pharmacist-led multifaceted tailored adherence intervention has been...

  5. Design and development of an Internet registry for congenital heart defects.

    Science.gov (United States)

    Mitri, Wajeeh; Sandridge, Amy L; Subhani, Shazia; Greer, William

    2002-02-01

    Congenital Heart Defects (CHD) are conditions that encompass more than 50 diagnoses and are due to developmental abnormalities early in fetal life. The King Faisal Specialist Hospital and Research Centre in the Kingdom of Saudi Arabia treats approximately 100 new cases per month. We recently developed a new CHD Registry that captures, stores and processes our data via the Internet. The Registry was developed using Hypertext Markup Language (HTML), Microsoft Active Server Pages and Microsoft Structured Query Language (SQL). Details of CHD cases are captured in a World Wide Web (WWW) Registry, permitting any browser-enabled PC or Mac to participate fully in all registry functions, including data-entry, viewing, editing, searching, reporting, validating, charting, and exporting data subsets to statistics packages. It includes "administrative" features and an active security system. The paper forms have been designed to reflect the "look and feel" of the Web pages. Automatic validation procedures are also included. Our Registry has been in operation for 3 years. It serves 10 PCs and contains more than 3,000 registered cases of CHD. It is the first CHD Registry to be fully functional on the Internet. It is also the first dedicated CHD registry, and the first to routinely report on the full spectrum of CHD diagnoses. The WWW offers several logistical advantages to disease registries, especially those that represent large regions. It also offers the possibility of sharing resources between registries, facilitating the aggregation and analysis of disease data on a world-wide scale. This is useful for rare diseases such as CHD (see http://rc.kfshrc.edu.sa/chdr/demo/). Copyright 2002 Wiley-Liss, Inc.

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

    Directory of Open Access Journals (Sweden)

    Alexander J. Fowler

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

  7. Screen Time Weight-loss Intervention Targeting Children at Home (SWITCH: process evaluation of a randomised controlled trial intervention

    Directory of Open Access Journals (Sweden)

    Louise Foley

    2016-05-01

    Full Text Available Abstract Background The Screen Time Weight-loss Intervention Targeting Children at Home (SWITCH trial tested a family intervention to reduce screen-based sedentary behaviour in overweight children. The trial found no significant effect of the intervention on children’s screen-based sedentary behaviour. To explore these null findings, we conducted a pre-planned process evaluation, focussing on intervention delivery and uptake. Methods SWITCH was a randomised controlled trial of a 6-month family intervention to reduce screen time in overweight children aged 9–12 years (n = 251. Community workers met with each child’s primary caregiver to deliver the intervention content. Community workers underwent standard training and were monitored once by a member of the research team to assess intervention delivery. The primary caregiver implemented the intervention with their child, and self-reported intervention use at 3 and 6 months. An exploratory analysis determined whether child outcomes at 6 months varied by primary caregiver use of the intervention. Results Monitoring indicated that community workers delivered all core intervention components to primary caregivers. However, two thirds of primary caregivers reported using any intervention component “sometimes” or less frequently at both time points, suggesting that intervention uptake was poor. Additionally, analyses indicated no effect of primary caregiver intervention use on child outcomes at 6 months, suggesting the intervention itself lacked efficacy. Conclusions Poor uptake, and the efficacy of the intervention itself, may have played a role in the null findings of the SWITCH trial on health behaviour and body composition. Trial registration The trial was registered in the Australian and New Zealand Clinical Trials Registry (no. ACTRN12611000164998 ; registration date: 10/02/2011.

  8. Paper 3: EUROCAT data quality indicators for population-based registries of congenital anomalies

    DEFF Research Database (Denmark)

    Loane, Maria; Dolk, Helen; Garne, Ester

    2011-01-01

    for fetal anomaly. EUROCAT's policy is to strive for high-quality data, while ensuring consistency and transparency across all member registries. A set of 30 data quality indicators (DQIs) was developed to assess five key elements of data quality: completeness of case ascertainment, accuracy of diagnosis...... for 2004-2008. This information is also available on the EUROCAT website for previous years. The EUROCAT DQIs allow registries to evaluate their performance in relation to other registries and allows appropriate interpretations to be made of the data collected. The DQIs provide direction for improving data...

  9. Donor registries, first-person consent legislation, and the supply of deceased organ donors.

    Science.gov (United States)

    Callison, Kevin; Levin, Adelin

    2016-09-01

    In this paper, we exploit the varied timing in state adoption of organ donor registries and first-person consent (FPC) legislation to examine corresponding changes in the supply of deceased organ donors. Results indicate that the establishment of a state organ donor registry leads to an increase in donation rates of approximately 8%, while the adoption of FPC legislation has no effect on the supply of organ donors. These results reinforce the need to encourage individuals to communicate their donation preferences, either explicitly via a registry or by discussing them with family. Copyright © 2016 Elsevier B.V. All rights reserved.

  10. Findings from the Peutz-Jeghers syndrome registry of uruguay.

    Directory of Open Access Journals (Sweden)

    Asadur Tchekmedyian

    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.

  11. The Portuguese Registry of Hypertrophic Cardiomyopathy: Overall results.

    Science.gov (United States)

    Cardim, Nuno; Brito, Dulce; Rocha Lopes, Luís; Freitas, António; Araújo, Carla; Belo, Adriana; Gonçalves, Lino; Mimoso, Jorge; Olivotto, Iacopo; Elliott, Perry; Madeira, Hugo

    2018-01-01

    We report the results of the Portuguese Registry of Hypertrophic Cardiomyopathy, an initiative that reflects the current spectrum of cardiology centers throughout the territory of Portugal. A direct invitation to participate was sent to cardiology departments. Baseline and outcome data were collected. A total of 29 centers participated and 1042 patients were recruited. Four centers recruited 49% of the patients, of whom 59% were male, and mean age at diagnosis was 53±16 years. Hypertrophic cardiomyopathy (HCM) was identified as familial in 33%. The major reason for diagnosis was symptoms (53%). HCM was obstructive in 35% of cases and genetic testing was performed in 51%. Invasive septal reduction therapy was offered to 8% (23% of obstructive patients). Most patients (84%) had an estimated five-year risk of sudden death of Portugal is characterized by relatively advanced age at diagnosis, and a high proportion of invasive treatment of obstructive forms. Long-term mortality is low; heart failure is the most common cause of death followed by sudden cardiac death. However, the burden of morbidity remains considerable, emphasizing the need for disease-specific treatments that impact the natural history of the disease. Copyright © 2017 Sociedade Portuguesa de Cardiologia. Publicado por Elsevier España, S.L.U. All rights reserved.

  12. Findings from the Peutz-Jeghers syndrome registry of Uruguay

    KAUST Repository

    Tchekmedyian, Asadur

    2013-11-19

    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.

  13. The Italian registry of aggressive rheumatoid arthritis -- the GIARA project.

    Science.gov (United States)

    Marchesoni, Antonio; Govoni, Marcello; Valentini, Gabriele; Valesini, Guido; Salaffi, Fausto; Macchioni, Pierluigi; Alberighi, Ornella Della Casa; Ferraccioli, Gianfranco

    2007-12-01

    In 1999, the Italian Society of Rheumatology started a project to determine the prevalence and clinical characteristics of aggressive rheumatoid arthritis (ARA). For 1 year, all patients with RA for > 5 years and referred to participating centers were entered in a registry and classified as having ARA if they fulfilled the following criteria: 10 swollen joints for at least 6 weeks, positive rheumatoid factor (RF), and at least one bone erosion (if disease duration of 2 years); (a) RF-positive and having 10 swollen joints or at least one newly eroded joint, or (b) if RF-negative, having 10 swollen joints and at least one newly eroded joint (if disease duration > 2 to 2 to 1.5, female sex, and RF positivity. Conditions other than RA were recorded in about 50% of the patients, and only 30% 40% were taking disease modifying antirheumatic drugs. In an Italian RA population, the GIARA (Gruppo Italiano Artrite Reumatoide Aggressiva) criteria for ARA were met by 15% of the patients with disease duration of 2 years, but erosions were seen in 35%. Upon referral, most of the RA patients were inadequately treated and had other conditions.

  14. Canadian Gas Association response to the Voluntary Challenge and Registry

    International Nuclear Information System (INIS)

    1996-11-01

    Since the inception of Canada's Voluntary Challenge and Registry (VCR) program in 1994, the Canadian Gas Association (CGA) and its members have been active in promoting emissions reductions. Natural gas is considered to be one of the cleanest fossil fuels. However, the industry faces several challenges. Over 50 per cent of Canadian production is exported to the US, but no credits are being received to offset emission reduction in the US from fuel switching to natural gas. Also, more than 80 per cent of the emissions from the natural gas cycle occur at the burner tip, therefore users of natural gas must share the responsibility for reducing emissions through conservation practices and greater use of high-efficiency equipment. The activities undertaken by the CGA in response to the VCR program, including research and technology development were reviewed, and a forecast of future activities was presented. It was predicted that the demand for Canadian natural gas will exceed the historic rate of emissions reductions accomplished through energy conservation and efficiency improvements, hence there is likely to be an increase in net emissions. An argument was made to establish proxy indicators of success for the gas industry for VCR, such as emissions on a unit basis (unit of energy, production, throughput, etc.) to take into account the fact that the increase in natural gas demand is, in part, the result of fuel switching from more polluting fuels

  15. Thai Twin Registry: description of the initial stage.

    Science.gov (United States)

    Nanakorn, Somsong; Chusilp, Kusuma; Kutanan, Wibhu

    2013-02-01

    The present study describes the initial phase of the Thai Twin Registry (TTR) in Khon Kaen University, a pioneer research university located in the Northeast of Thailand. The initial steps of the study included the analysis of dermatoglyphic information in Thai twins for answering the research question: Are monozygotic (MZ) and dizygotic (DZ) twins different in dermatoglyphic variables? Subjects were 212 twin pairs (131 MZ and 81 [corrected] DZ), consisting of 155 males and 269 females. Four types of fingerprint pattern (FP) - that is, arch, radial loop, ulnar loop, and whorl - were classified and analyzed and compared between MZ and DZ twins. The arch radial loop and whorl frequencies differ between MZ and DZ twins. When comparing FP in each finger, only the right little finger shows a statistically different FP, while the FP similarity average from 10 homologous fingers of co-twins was greater in MZ than DZ twins. By using the Area Under the Receiver Operating Characteristic curve analysis, the MZ twins could be differentiated from DZ twins by the FP similarity. Summarizing, this valuable report about TTR was conducted by analysis of FP data, which indicated that the MZ and DZ twins exhibited FP pattern and FP similarity differences. Other dermatoglyphic studies of the existing FP database, such as finger ridge count, finger ridge density, and minutia, will be considered for ongoing research at the TTR.

  16. European registry on patients with ST-elevation myocardial infarction transferred for mechanical reperfusion with a special focus on early administration of abciximab -- EUROTRANSFER Registry.

    Science.gov (United States)

    Dudek, Dariusz; Siudak, Zbigniew; Janzon, Magnus; Birkemeyer, Ralf; Aldama-Lopez, Guillermo; Lettieri, Corrado; Janus, Bogdan; Wisniewski, Andrzej; Berti, Sergio; Olivari, Zoran; Rakowski, Tomasz; Partyka, Lukasz; Goedicke, Jochen; Zmudka, Krzysztof

    2008-12-01

    Abciximab is established as adjunct to primary percutaneous coronary intervention (PCI). Based on some smaller studies, ST-segment elevation myocardial infarction (STEMI) networks in various European countries have adopted the start of abciximab before transfer to the catheterization laboratory (cathlab) hospital as part of their routine treatment options. Although a recently published study did not reveal improved clinical outcome when starting abciximab before the cathlab, a potential benefit from such early administration, in particular in the setting of transfer networks, remains unclear and has been the subject of debate. Data of consecutive patients with STEMI transferred for primary PCI in hospital/ambulance-feeded STEMI networks treated between November 2005 and January 2007 at 15 PCI centers from 7 European countries were collected in the web-based EUROTRANSFER Registry. Data from a total of 1,650 patients were collected. Abciximab was administered to 1086 patients (66%), of whom 727 received early abciximab (EA group: abciximab started before admission to cathlab, at least 30 minutes before balloon). Another 359 patients received late abciximab (LA group: periprocedural administration of abciximab in the cathlab). Preprocedural TIMI 3 flow was observed in 17.7% of patients with EA and in 8.9% in the LA group (P group versus 7.5% with LA (OR 0.49, 95% CI 0.29-0.85, P = .011), and composite 30-day outcome including death, repeated myocardial infarction, and urgent revascularization was present in 5.5% and 10.3%, respectively (OR 0.51, 95% CI 0.32-0.81, P = .004). These differences remain statistically significant in favor of early abciximab after accounting and adjustment for differences between the groups by means of a multivariate regression model and propensity score. Patients in STEMI networks transferred for primary PCI who have received abciximab before transfer rather than in the cathlab had more patent arteries before PCI and showed lower rates for

  17. Uses of cancer registries for public health and clinical research in Europe: Results of the European Network of Cancer Registries survey among 161 population-based cancer registries during 2010–2012

    NARCIS (Netherlands)

    Siesling, Sabine; Louwman, W.J.; Kwast, A.; van den Hurk, C.J.G.; O'Callaghan, M.; Rosso, S.; Zanetti, R.; Storm, H.; Comber, H.; Steliarova-Foucher, E.; Coebergh, J.W.W.

    2015-01-01

    Aim To provide insight into cancer registration coverage, data access and use in Europe. This contributes to data and infrastructure harmonisation and will foster a more prominent role of cancer registries (CRs) within public health, clinical policy and cancer research, whether within or outside the

  18. Implementing a Childhood Cancer Outcomes Surveillance System Within a Population-Based Cancer Registry

    Directory of Open Access Journals (Sweden)

    Oscar Ramirez

    2018-03-01

    Full Text Available Purpose: Approximately 80% of cases of childhood cancer occur in low- and middle-income countries and are associated with high mortality rates. Assessing outcomes is essential for designing effective strategies to improve outcomes equally worldwide. We implemented a real-time surveillance system, VIGICANCER, embedded in a population-based cancer registry (PBCR to assess childhood cancer outcomes. Methods: VIGICANCER was established in 2009 as an integral part of Cali’s PBCR to collect real-time data on outcomes of patients (age < 19 years with a new diagnosis of cancer treated in pediatric oncology units in Cali, Colombia. Baseline and follow-up data (death, relapse, treatment abandonment, second neoplasms were collected from medical records, hospital discharge logs, pathology reports, death certificates, and the National Public Health Insurance database. A quality assurance process was implemented for the system. Results: From 2009 to 2013, data from 1,242 patients were included in VIGICANCER: 32% of patients were younger than 5 years, 55% were male, and 15% were Afro-descendants. International Classification of Childhood Cancer group I diagnoses predominated in all age groups except children younger than 1 year old, in whom CNS tumors predominated. Five-year overall survival for all cancers was 51.7% (95% CI, 47.9% to 55.4% for children (< 15 years, and 39.4% (95% CI, 29.8% to 50.5% for adolescents (15 to 18.9 years. Five-year overall survival for acute lymphoblastic leukemia was 55.6% (95% CI, 48.5% to 62.2%. Conclusion: Our study demonstrates the feasibility of implementing a real-time childhood cancer outcomes surveillance system embedded in a PBCR that can guide interventions to improve clinical outcomes in low- and middle-income countries.

  19. Spatial-temporal analysis of prostate cancer incidence from the Pennsylvania Cancer Registry, 2000-2011

    Directory of Open Access Journals (Sweden)

    Ming Wang

    2017-11-01

    Full Text Available Prostate cancer is the most common cancer diagnosed among males, and the incidence in Pennsylvania, USA is considerably higher than nationally. Knowledge of regional differences and time trends in prostate cancer incidence may contribute to a better understanding of aetiologic factors and racial disparities in outcomes, and to improvements in preventive intervention and screening efforts. We used Pennsylvania Cancer Registry data on reported prostate cancer diagnoses between 2000 and 2011 to study the regional distribution and temporal trends of prostate cancer incidence in both Pennsylvania White males and Philadelphia metropolitan area Black males. For White males, we generated and mapped county-specific age-adjusted incidence and standardised incidence ratios by period cohort, and identified spatial autocorrelation and local clusters. In addition, we fitted Bayesian hierarchical generalised linear Poisson models to describe the temporal and aging effects separately in Whites state-wide and metropolitan Philadelphia blacks. Incidences of prostate cancer among white males declined from 2000-2002 to 2009-2011 with an increasing trend to some extent in the period 2006-2008 and significant variation across geographic regions, but less variation exists for metropolitan Philadelphia including majority of Black patients. No significant aging effect was detected for White and Black men, and the peak age group for prostate cancer risk varied by race. Future research should seek to identify potential social and environmental risk factors associated with geographical/racial disparities in prostate cancer. As such, there is a need for more effective surveillance so as to detect, reduce and control the cancer burden associated with prostate cancer.

  20. Drug versus placebo randomized controlled trials in neonates: A review of ClinicalTrials.gov registry.

    Directory of Open Access Journals (Sweden)

    Emilie Desselas

    Full Text Available Despite specific initiatives and identified needs, most neonatal drugs are still used off-label, with variable dosage administrations and schedules. In high risk preterm and term neonates, drug evaluation is challenging and randomized controlled trials (RCT are difficult to conduct and even more is the use of a placebo, required in the absence of a reference validated drug to be used as comparator.We analyzed the complete ClinicalTrials.gov registry 1 to describe neonatal RCT involving a placebo, 2 to report on the medical context and ethical aspects of placebo use.Placebo versus drug RCT (n = 146, either prevention trials (n = 57, 39% or therapeutic interventions (n = 89, 61%, represent more than a third of neonatal trials registered in the National Institute of Health clinical trial database (USA since 1999. They mainly concerned preterm infants, evaluating complications of prematurity. Most trials were conducted in the USA, were single centered, and funded by non-profit organizations. For the three top drug trials evaluating steroids (n = 13, 9.6%, erythropoietin (EPO, n = 10, 6.8% and nitric oxide (NO, n = 9, 6.2%, the objectives of the trial and follow-up were analyzed in more details.Although a matter of debate, the use of placebo should be promoted in neonates to evaluate a potential new treatment, in the absence of reference drug. Analysis of the trials evaluating steroids showed that long-term follow-up of exposed patients, although required by international guidelines, is frequently missing and should be planned to collect additional information and optimize drug evaluation in these high-risk patients.