Real World Evidence/Data Workstream
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The goals of this Workstream are 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:
- summarize 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
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. This was published in Pulmonary Circulation:
The session was repeated for patients at PHA’s summer 2024 conference.
The next steps for the Workstream are to use a Delphi method to look at standardising data collected by global PH registries.
If you’d like to share your expertise with the group, they’d love to hear from you!
Real World Evidence Members
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.
Interested in accessing global data on PH patient experience?
Almost 4,000 patients and carers across 85 countries completed Phase 1 of our PH Global Patient Survey (PH GPS). Questions across all PH groups included diagnostic tests & timelines, genetic testing, treatments, financial burdens, hospital visits, research participation, quality of life, telemedicine, patient-reported outcome measures, and self-monitoring with digital technology. The findings have the potential to improve patient care, guide future research and help us address unmet needs.