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.
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.
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.
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 from 90 countries took part in the Pulmonary Hypertension Global Patient Survey (PHGPS), sharing insights across all PH groups and every stage of the patient journey.
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.
