Pulmonary Circulation (Oct 2023)
Real‐world evidence to advance knowledge in pulmonary hypertension: Status, challenges, and opportunities. A consensus statement from the Pulmonary Vascular Research Institute's Innovative Drug Development Initiative's Real‐world Evidence Working Group
- Kellie Morland,
- Christian Gerges,
- Jean Elwing,
- Scott H. Visovatti,
- Jason Weatherald,
- Kari R. Gillmeyer,
- Sandeep Sahay,
- Stephen C. Mathai,
- Athénaïs Boucly,
- Paul G. Williams,
- Sivadasanpillai Harikrishnan,
- Evan P. Minty,
- Lukas Hobohm,
- Arun Jose,
- Roberto Badagliacca,
- Edmund M. T. Lau,
- Zhi‐Cheng Jing,
- Rebecca R. Vanderpool,
- Charles Fauvel,
- Jose Leonidas Alves Jr.,
- Geoff Strange,
- Tomas Pulido,
- Junyan Qian,
- Mengtao Li,
- Valentina Mercurio,
- Jason G. E. Zelt,
- Victor M. Moles,
- Meghan M. Cirulis,
- Sylvia M. Nikkho,
- Raymond L. Benza,
- C. Gregory Elliott
Affiliations
- Kellie Morland
- Global Medical Affairs United Therapeutics Corporation Research Triangle Park North Carolina USA
- Christian Gerges
- Department of Internal Medicine II, Division of Cardiology Medical University of Vienna Vienna Austria
- Jean Elwing
- Division of Pulmonary, Critical Care, and Sleep Medicine University of Cincinnati Cincinnati Ohio USA
- Scott H. Visovatti
- Division of Cardiovascular Medicine The Ohio State University Columbus Ohio USA
- Jason Weatherald
- Department of Medicine, Division of Pulmonary Medicine University of Alberta Edmonton Canada
- Kari R. Gillmeyer
- The Pulmonary Center Boston University Chobian & Avedisian School of Medicine Boston Massachusetts USA
- Sandeep Sahay
- Division of Pulmonary, Critical Care & Sleep Medicine Houston Methodist Hospital Houston Texas USA
- Stephen C. Mathai
- Division of Pulmonary and Critical Care Medicine Johns Hopkins University School of Medicine Baltimore Maryland USA
- Athénaïs Boucly
- Faculté de Médecine Université Paris‐Saclay Le Kremlin‐Bicêtre France
- Paul G. Williams
- Center of Chest Diseases & Critical Care Milpark Hospital Johannesburg South Africa
- Sivadasanpillai Harikrishnan
- Sree Chitra Tirunal Institute for Medical Sciences and Technology Trivandrum Kerala India
- Evan P. Minty
- Department of Medicine & O'Brien Institute for Public Health University of Calgary Calgary Canada
- Lukas Hobohm
- Department of Cardiology University Medical Center of the Johannes Gutenberg University Mainz Mainz Germany
- Arun Jose
- Division of Pulmonary, Critical Care, and Sleep Medicine University of Cincinnati Cincinnati Ohio USA
- Roberto Badagliacca
- Department of Clinical, Anesthesiological and Cardiovascular Sciences, Sapienza University of Rome Policlinico Umberto I Rome Italy
- Edmund M. T. Lau
- Department of Respiratory Medicine, Royal Prince Alfred Hospital University of Sydney Camperdown New South Wales Australia
- Zhi‐Cheng Jing
- State Key Laboratory of Complex Severe and Rare Diseases, Peking Union Medical College Hospital Chinese Academy of Medical Sciences and Peking Union Medical College Beijing China
- Rebecca R. Vanderpool
- Division of Cardiovascular Medicine The Ohio State University Columbus Ohio USA
- Charles Fauvel
- Service de Cardiologie, Centre de Compétence en Hypertension Pulmonaire 27/76, Centre Hospitalier Universitaire Charles Nicolle, INSERM EnVI U1096 Université de Rouen Rouen France
- Jose Leonidas Alves Jr.
- Pulmonary Division, Heart Institute University of São Paulo Medical School São Paulo Brazil
- Geoff Strange
- School of Medicine The University of Notre Dame Australia Perth Western Australia Australia
- Tomas Pulido
- Ignacio Chávez National Heart Institute México City Mexico
- Junyan Qian
- Department of Rheumatology and Clinical Immunology, Chinese Academy of Medical Sciences & Peking Union Medical College, National Clinical Research Center for Dermatologic and Immunologic Diseases (NCRC‐DID), Ministry of Science & Technology, State Key Laboratory of Complex Severe and Rare Diseases, Peking Union Medical College Hospital (PUMCH), Key Laboratory of Rheumatology and Clinical Immunology Ministry of Education Beijing China
- Mengtao Li
- Department of Rheumatology and Clinical Immunology, Chinese Academy of Medical Sciences & Peking Union Medical College, National Clinical Research Center for Dermatologic and Immunologic Diseases (NCRC‐DID), Ministry of Science & Technology, State Key Laboratory of Complex Severe and Rare Diseases, Peking Union Medical College Hospital (PUMCH), Key Laboratory of Rheumatology and Clinical Immunology Ministry of Education Beijing China
- Valentina Mercurio
- Department of Translational Medical Sciences Federico II University Naples Italy
- Jason G. E. Zelt
- Department of Medicine, Faculty of Medicine University of Ottawa Ottawa Canada
- Victor M. Moles
- Division of Cardiovascular Medicine University of Michigan Ann Arbor Michigan USA
- Meghan M. Cirulis
- Division of Pulmonary and Critical Care Medicine University of Utah Salt Lake City Utah USA
- Sylvia M. Nikkho
- Global Clinical Development Bayer AG Berlin Germany
- Raymond L. Benza
- Mount Sinai Heart Icahn School of Medicine at Mount Sinai New York New York USA
- C. Gregory Elliott
- Division of Pulmonary and Critical Care Medicine University of Utah Salt Lake City Utah USA
- DOI
- https://doi.org/10.1002/pul2.12317
- Journal volume & issue
-
Vol. 13,
no. 4
pp. n/a – n/a
Abstract
Abstract This manuscript on real‐world evidence (RWE) in pulmonary hypertension (PH) incorporates the broad experience of members of the Pulmonary Vascular Research Institute's Innovative Drug Development Initiative Real‐World Evidence Working Group. We aim to strengthen the research community's understanding of RWE in PH to facilitate clinical research advances and ultimately improve patient care. Herein, we review real‐world data (RWD) sources, discuss challenges and opportunities when using RWD sources to study PH populations, and identify resources needed to support the generation of meaningful RWE for the global PH community.
Keywords
- administrative claims data
- electronic health records
- patient‐generated health data
- real‐world data
- registries
