Widening Patient Engagement for Rare Disease Drug Trials: The Perspectives of Patients With Idiopathic Pulmonary Fibrosis on Participating in Clinical Drug Trials and Drug Trial Design
A Patient Advisory Group (PAG) comprising six people with IPF gave input on the research protocol and then on the scope and content of the ongoing research. Two patients from international patient organisations served as a Steering Group (SG). Members of these groups provided their interpretations of the study findings and gave insight on their experiences in clinical design and participation.
Authors
- Julia Frost (ORCID: https://orcid.org/0000-0002-3503-5911)
- Catherine J. Pope (ORCID: https://orcid.org/0000-0002-8935-6702)
- Catharina van den Dungen
- Jessica Mandizha (ORCID: https://orcid.org/0000-0002-5218-4732)
- Steve Jones
- Lauren Asare
Institutions
- University of Exeter (GB)
- Royal Devon & Exeter NHS Foundation Trust (GB)
- Royal Devon and Exeter Hospital (GB)
Publication Details
- Journal
- Health Expectations
- Published
- 2025-04-01
- DOI
- https://doi.org/10.1111/hex.70260
- Citations
- 1
- Primary Topic
- Interstitial Lung Diseases and Idiopathic Pulmonary Fibrosis
- Type
- article
- Field-Weighted Citation Impact
- 1.52
Funders
- Galápagos
- Medical Research Council