Extract
Disease registries are important sources of real-world evidence that inform clinical practice and health policy, particularly when randomised controlled trials do not exist [1]. Much of what we know today about pulmonary arterial hypertension (PAH) has come from observational studies from national and/or international disease registries.
Abstract
Registries have greatly contributed to knowledge about PAH epidemiology, risk factors, prognosis and treatment. Future registries face unique challenges but may benefit from integration of multiple data sources and capitalising on “Big Data” opportunities. http://bit.ly/2OBpapG
Footnotes
Provenance: Commissioned article, peer reviewed.
Conflict of interest: J. Weatherald reports grants, personal fees and non-financial support from Janssen Inc. and Actelion, personal fees and non-financial support from Bayer, personal fees from Novartis, and grants from Alberta Lung Association, Canadian Vascular Network, European Respiratory Society and Canadian Thoracic Society, outside the submitted work.
Conflict of interest: A. Reis reports grants, personal fees and non-financial support from Janssen Inc. and Actelion, outside the submitted work.
Conflict of interest: O. Sitbon reports grants, personal fees and non-financial support from Actelion Pharmaceuticals, Bayer and Merck, grants from GlaxoSmithKline, grants, and personal fees from United Therapeutics and Gossamer Bio, outside the submitted work.
Conflict of interest: M. Humbert reports personal fees from Actelion and Merck, and grants and personal fees from Bayer, GSK and United Therapeutics, outside the submitted work.
- Received September 26, 2019.
- Accepted October 3, 2019.
- Copyright ©ERS 2019.
This article is open access and distributed under the terms of the Creative Commons Attribution Non-Commercial Licence 4.0.