Universität zu Köln

McGoon, Michael D., Benza, Raymond L., Escribano-Subias, Pilar, Jiang, Xin, Miller, Dave P., Peacock, Andrew J., Pepke-Zaba, Joanna, Pulido, Tomas, Rich, Stuart, Rosenkranz, Stephan, Suissa, Samy and Humbert, Marc ORCID: 0000-0003-0703-2892 (2013). Pulmonary Arterial Hypertension Epidemiology and Registries. J. Am. Coll. Cardiol., 62 (25). S. D51 - 9. NEW YORK: ELSEVIER SCIENCE INC. ISSN 1558-3597

Full text not available from this repository.

Abstract

Registries of patients with pulmonary arterial hypertension (PAH) have been instrumental in characterizing the presentation and natural history of the disease and provide a basis for prognostication. Since the initial accumulation of data conducted in the 1980s, subsequent registry databases have yielded information about the demographic factors, treatment, and survival of patients and have permitted comparisons between populations in different eras and environments. Inclusion of patients with all subtypes of PAH has also allowed comparisons of these subpopulations. We describe herein the basic methodology by which PAH registries have been conducted, review key insights provided by registries, summarize issues related to interpretation and comparison of the results, and discuss the utility of data to predict survival outcomes. Potential sources of bias, particularly related to the inclusion of incident and/or prevalent patients and missing data, are addressed. A fundamental observation of current registries is that survival in the modern treatment era has improved compared with that observed previously and that outcomes among PAH subpopulations vary substantially. Continuing systematic clinical surveillance of PAH will be important as treatment evolves and as understanding of mechanisms advance. Considerations for future directions of registry studies include enrollment of a broader population of patients with pulmonary hypertension of all clinical types and severity and continued globalization and collaboration of registry databases. (C) 2013 by the American College of Cardiology Foundation

Item Type:	Journal Article
Creators:	Creators Email ORCID ORCID Put Code McGoon, Michael D. UNSPECIFIED UNSPECIFIED UNSPECIFIED Benza, Raymond L. UNSPECIFIED UNSPECIFIED UNSPECIFIED Escribano-Subias, Pilar UNSPECIFIED UNSPECIFIED UNSPECIFIED Jiang, Xin UNSPECIFIED UNSPECIFIED UNSPECIFIED Miller, Dave P. UNSPECIFIED UNSPECIFIED UNSPECIFIED Peacock, Andrew J. UNSPECIFIED UNSPECIFIED UNSPECIFIED Pepke-Zaba, Joanna UNSPECIFIED UNSPECIFIED UNSPECIFIED Pulido, Tomas UNSPECIFIED UNSPECIFIED UNSPECIFIED Rich, Stuart UNSPECIFIED UNSPECIFIED UNSPECIFIED Rosenkranz, Stephan UNSPECIFIED UNSPECIFIED UNSPECIFIED Suissa, Samy UNSPECIFIED UNSPECIFIED UNSPECIFIED Humbert, Marc UNSPECIFIED orcid.org/0000-0003-0703-2892 UNSPECIFIED
URN:	urn:nbn:de:hbz:38-469909
DOI:	10.1016/j.jacc.2013.10.023
Journal or Publication Title:	J. Am. Coll. Cardiol.
Volume:	62
Number:	25
Page Range:	S. D51 - 9
Date:	2013
Publisher:	ELSEVIER SCIENCE INC
Place of Publication:	NEW YORK
ISSN:	1558-3597
Language:	English
Faculty:	Unspecified
Divisions:	Unspecified
Subjects:	no entry
Uncontrolled Keywords:	Keywords Language LONG-TERM SURVIVAL; PREDICTING SURVIVAL; CHINESE PATIENTS; REVEAL REGISTRY; DISEASE; INSIGHTS; DEMOGRAPHICS; DIAGNOSIS; INCIDENT; MODEL Multiple languages Cardiac & Cardiovascular Systems Multiple languages
URI:	http://kups.ub.uni-koeln.de/id/eprint/46990