Real World Evidence/Data Workstream

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
   

Events

Upcoming

• Satellite Meeting at PVRI 2027 Bangkok
  PVRI’s IDDI Workstreams will come together for satellite sessions at PVRI 2027 Bangkok on Wednesday 27 January 2027, 08:30–15:00. Join us for focused discussion, shared learning, and collaboration across key areas of PH research and care. The satellite sessions are open to all PVRI 2027 delegates and can be selected when registering for the Congress.
  Explore the full programme

Past

• 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.
  Watch the recording here
   

• 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) USA.
  Watch the recording here

  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
   

If you’d like to share your expertise with the group, they’d love to hear from you!