The American Heart Association's Recommendations for Expanding the Applications of Existing and Future  Clinical Registries

Bufalino, Vincent J.; Masoudi, Frederick A.; Stranne, Steven K.; Horton, Katie; Albert, Nancy M.; Beam, Craig; Bonow, Robert O.; Davenport, R.; Girgus, Meighan; Fonarow, Gregg C.; Krumholz, Harlan M.; Legnini, Mark W.; Lewis, William R.; Nichol, Graham; Peterson, Eric D.; Rosamond, Wayne D.; Rumsfeld, John S.; Schwamm, Lee H.; Shahian, David M.; Spertus, John A.; Woodard, Pamela K.; Yancy, Clyde W.

doi:10.1161/cir.0b013e3182181529

Cited by 108 publications

(87 citation statements)

References 45 publications

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“…This is known from other registries which showed a better prognosis of prevalent cases due to selection bias [6,23] . Our registry provides data from different PH classifications over predefined time periods.…”

Section: Event-free Survivalmentioning

confidence: 81%

Long-term data from the Swiss pulmonary hypertension registry

Ulrich¹,

Geiser²,

Tamm³

et al. 2014

Pneumologie

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Background: Registries are important for real-life epidemiology on different pulmonary hypertension (PH) groups. Objective: To provide long-term data of the Swiss PH-registry 1998-2012. Methods: PH-patients were classified in 5 groups and registered upon written informed consent at 5 Universityand 8 associated hospitals since 1998. NYHA, 6 minute walk distance, hemodynamics and therapy were registered at baseline. Patients were regularly followed and therapy and events (death, transplantation, endarterectomy or lost to follow-up) registered. The data was stratified according to the time of diagnosis into prevalent before 2000 and incident during 2000-04, 2005-08 and 2009-12. Results: From 996 (53% female) PH-patients, 549 had pulmonary arterial hypertension (PAH), 36 PH due to left heart -, 127 due to lung disease, 249 chronic thromboembolic PH (CTEPH) and 35 miscellaneous PH. Age and BMI significantly increased over time whereas hemodynamic severity decreased. Overall, event-free survival was 84, 72, 64, 58% for the years 1-4 and similar for time periods since 2000, but better during the more recent periods for PAH and CTEPH. 89% of all PAH had target medical therapy, 43% combinationtherapy. 14 resp. 2% of CTEPH underwent pulmonary endarterectomy or transplantation, 87 % were treated with PAH-target therapy. Conclusion: Since 2000, incident Swiss PH-patients registered were older, hemodynamically better and mostly treated with PAH-target therapies. Key WordsRegistry · Pulmonary hypertension · Pulmonary arterial hypertension · Chronic thromboembolic pulmonary hypertension Abstract Background: Registries are important for real-life epidemiology on different pulmonary hypertension (PH) groups. Objective: To provide long-term data of the Swiss PH registry of 1998-2012. Methods: PH patients have been classified into 5 groups and registered upon written informed consent at 5 university and 8 associated hospitals since 1998. New York Heart Association (NYHA) class, 6-min walk distance, hemodynamics and therapy were registered at baseline. Patients were regularly followed, and therapy and events (death, transplantation, endarterectomy or loss to follow-up) registered. The data were stratified according to the time of diagnosis into prevalent before 2000 and incident during 2000-

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Section: Event-free Survivalmentioning

confidence: 81%

Long-term data from the Swiss pulmonary hypertension registry

Ulrich¹,

Geiser²,

Tamm³

et al. 2014

Pneumologie

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“…Sustainable funding is a real issue for clinical registries, and fees for data could stimulate fruitful collaboration on health care quality improvement projects. [34] However, this could also lead to moral and legal issues of data ownership, which need to be further explored.…”

Section: Ethical Perspectivementioning

confidence: 99%

Impact of new health care policies on the quality of acute myocardial infarction treatment in Swiss hospitals: A before and after observational study

Dorey

Puhan

Biller‐Andorno

2016

JHA

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Objective: Following a revision of the Swiss Federal Health Insurance Act, the regional hospital planning structure was modified and the hospital financing organized at a national level with the use of diagnosis related groups (SwissDRGs). The aim of this observational study was to determine in an independent way the initial impact of these changes on the quality of hospital treatment, with patients hospitalized for Acute Myocardial Infarction (AMI) being the chosen study group. Methods: We used prospective data from a Swiss clinical registry for AMI. The quality was measured based on the adherence to 10 evidence-based performance indicators for AMI treatment, and on the evaluation of in-hospital outcomes (mortality, complications, length of hospital stay [LOS]) globally and for seven pre-defined vulnerable subgroups. The study compared patient-based data before (2011) and after (2012) the implementation of the reform. Results: The study included 33 matched hospitals, and compared the AMI treatment of 2,491 patients in 2011 (before) and 2,544 in 2012 (after the hospital reform). No significant changes in the evidence-based performance indicators were observed, but an on average one day reduction in the LOS and worse outcomes in one of the pre-defined group of patients were found. The issue of how the clinical team achieved these results was not directly explored due to the underlying registry's unalterable structure. Conclusions: One year after the implementation of a new hospital financing system in Switzerland, the quality of treatment delivered to patients hospitalized for AMI was maintained overall. The worse in-hospital mortality in one pre-defined vulnerable subgroup could reflect the emergence of difficulties for clinical teams to cope with patients demanding extra care and time. Further investigation is warranted.

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“…6 To overcome problems and challenges in developing CVD registries in Europe, the creation of specific recommendations by European Associations and countries with long experience in maintaining cardiac rehabilitation registries, is an emerging need. 7 The first efforts with the Carinex Survey 8 and the European Cardiac Rehabilitation Inventory Survey 9 were recently improved by the European Cardiac Rehabilitation Registry and Database (EuroCaReD), 10 which is a significant proof that a multi-national cardiac rehabilitation registry in European countries is feasible. This registry has created a tool for putting together information on the clinical status of cardiac rehabilitation across Europe.…”

mentioning

confidence: 99%

Seeking best practices for cardiac rehabilitation registries in Europe

Davos

2017

Eur J Prev Cardiolog

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The American Heart Association's Recommendations for Expanding the Applications of Existing and Future Clinical Registries

Cited by 108 publications

References 45 publications

Long-term data from the Swiss pulmonary hypertension registry

Long-term data from the Swiss pulmonary hypertension registry

Impact of new health care policies on the quality of acute myocardial infarction treatment in Swiss hospitals: A before and after observational study

Seeking best practices for cardiac rehabilitation registries in Europe

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