Real World Evidence/Data Workstream

Back to Task Forces & IDDI Workstreams
Real World Evidence/Data Workstream image

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 PHA US. 

The session will be repeated for patients at PHA’s summer 2024 conference. 

The next steps for the Workstream are to use a Delphi model 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!

Leaders

Kellie Moreland, United Therapeutics Corporation
Greg Elliott, Mount Sinai