Learning from registries in pulmonary arterial hypertension: pitfalls and recommendations.
Journal
European respiratory review : an official journal of the European Respiratory Society
ISSN: 1600-0617
Titre abrégé: Eur Respir Rev
Pays: England
ID NLM: 9111391
Informations de publication
Date de publication:
31 Dec 2019
31 Dec 2019
Historique:
received:
07
05
2019
accepted:
20
07
2019
entrez:
20
12
2019
pubmed:
20
12
2019
medline:
30
5
2020
Statut:
epublish
Résumé
Pulmonary arterial hypertension is a rare and incurable chronic disease characterised by a progressive increase in pulmonary vascular resistance and right heart failure. Patient registries collecting observational data can be of great value in the understanding of clinical problems. While clinical trials provide data in selected patient populations, registries better depict real-life practice. This review aims to reflect the input of patient registries in the general knowledge of the disease. Advances in epidemiology of the different subgroups, including data on incidence and/or prevalence, increasing age at presentation and stagnating diagnostic delay are reported. The importance of haemodynamic definition criteria and cardiac comorbidities are underscored. The review also shows the major transformation that pulmonary arterial hypertension therapeutic management has undergone, with still insufficient use of combination therapies; consecutive improvement in outcome; upcoming evidence in disfavour of anticoagulation; and validity of the available risk-stratification tools derived from large registries. Product registries are also briefly presented. Finally, the benefits of registries and methodological aspects are discussed, including immortal time bias, registry data quality and recommendations from EU organisations (EUCERD and PARENT).
Identifiants
pubmed: 31852746
pii: 28/154/190050
doi: 10.1183/16000617.0050-2019
pmc: PMC9488628
pii:
doi:
Types de publication
Journal Article
Review
Langues
eng
Sous-ensembles de citation
IM
Informations de copyright
Copyright ©ERS 2019.
Déclaration de conflit d'intérêts
Conflict of interest: K. Swinnen has nothing to disclose. Conflict of interest: R. Quarck has nothing to disclose. Conflict of interest: L. Godinas reports personal fees from Actelion and MSD, outside the submitted work. Conflict of interest: C. Belge reports personal fees from Actelion and Bayer, outside the submitted work. Conflict of interest: M. Delcroix reports grants and personal fees from Actelion, personal fees from Bayer, GSK, MSD, Reata, Bellerophon and Eli Lilly, outside the submitted work.
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