Real World Evidence/Data Workstream
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Aims & Goals
This workstream aims to strengthen the research community's understanding of real world evidence in PH to facilitate clinical research advances and ultimately improve patient care. In particular, they aim to:
- summarise the status of Real World Evidence in PH indications, and highlight opportunities for data generation
- engage academia, drug and device developers and regulators to develop key research questions that could be meaningfully addressed by Real World Evidence research
- and ultimately to improve real-world patient care
Key Goals:
The Real World Evidence/Data Workstream have recently initiated a Delphi method to define a core data set for global PH registries. Round 1 of the Delphi is complete and Round 2 is scheduled for completion in Q2 2026.
If you’d like to share your expertise with the group, they’d love to hear from you!
Events
PVRI 2026 Dublin
The Workstream recently completed a scoping review of data elements collected within national PH registries. This effort was led by Dr. Kari Gillmeyer, Dr Sarah Cohen & Dr Jason Weatherald. The results were presented as part of the IDDI Satellite Meeting at PVRI 2026 Dublin.
PVRI 2024 London
In December 2023, the Workstream published a consensus statement ‘Real-World Evidence to Advance Knowledge in Pulmonary Hypertension: Status, Challenges, and Opportunities’ and presented this at PVRI’s London 2024 Congress as a joint session with the American patient organisation Pulmonary Hypertension Association (PHA) US.
The session was repeated for patients at PHA’s summer 2024 conference.
Publications
- Morland, K., Gerges, C., Elwing, J., Visovatti, S. H., Weatherald, J., et al. (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'. Pulmonary Circulation, 13(4), e12317
Leaders
Kellie Morland, United Therapeutics Corporation, USA
Greg Elliott, University of Utah / Intermountain Health, USA
Work Group 1
Athénaïs Boucly (Leader), Université Paris-Saclay / Assistance Publique Hôpitaux de Paris, France
Scott Visovatti (Leader), The Ohio State University, USA
Charles Fauvel, Centre Hospitalier Universitaire Charles Nicolle / Université de Rouen, France
Victor Moles, University of Michigan, USA
Rebecca Vanderpool, The Ohio State University, USA
Work Group 2
Jason Weatherald (Leader), University of Alberta, Canada
Jean Elwing (Leader), University of Cincinnati, USA
Evan Patrick Minty, University of Calgary, Canada
Arun Jose, University of Cincinnati, USA
Jose Leonidas Alves Jr, University of São Paulo Medical School, Brazil
Junyan Qian, Chinese Academy of Medical Sciences & Peking Union Medical College, China
Mengtao Li, Chinese Academy of Medical Sciences & Peking Union Medical College, China
Valentina Mercurio, Federico II University, Italy
Jason Zelt, University of Ottawa, Canada
Work Group 3
Sandeep Sahay (Leader), Houston Methodist Hospital, USA
Stephen Mathai (Leader), Johns Hopkins University School of Medicine, USA
Paul Williams, Milpark Hospital, South Africa
Sivadasanpillai Harikrishnan, Sree Chitra Tirunal Institute for Medical Sciences and Technology, India
Zhi-Cheng Jing, Chinese Academy of Medical Sciences and Peking Union Medical College, China
Geoff Strange, The University of Notre Dame, Australia
Tomas Pulido, Ignacio Chávez National Heart Institute, Mexico
Work Group 4
Kari Gillmeyer (Leader), Boston University Chobian & Avedisian School of Medicine / Center for Healthcare Organization & Implementation Research, USA
Christian Gerges (Leader), Medical University of Vienna, Austria
Lukas Hobohm, Johannes Gutenberg University of Mainz, Germany
Roberto Badagliacca, Sapienza University of Rome, Italy
Edmund Lau, University of Sydney, Australia
Meghan Cirulis, Intermountain Medical Center / University of Utah, USA
Want to be part of something special?
All PVRI members are welcome to join an IDDI Workstream or a Task Force.
Our Regional Task Forces don't yet have global coverage. If you're interested in starting one, please contact us.
2025–26 IDDI Workstream & Task Forces Report
PVRI’s latest report highlights how global IDDI Workstreams and Task Forces are accelerating progress in pulmonary hypertension research, care, and innovation. Discover key achievements from across regions and specialties.
Interested in accessing global data on PH patient experience?
Almost 4,000 patients and carers across 85 countries completed our PH Global Patient Survey (PHGPS). The data covers all PH groups and every stage of the patient journey — from diagnostic tests and timelines to treatments, genetic testing, financial pressures, hospital visits, research participation, quality of life, telemedicine, PROMs, and self-monitoring through digital tools.
The findings have the potential to improve patient care, guide future research and help us address unmet needs.