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

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

ABSTRACT Background Research about patient engagement for people with rare diseases has identified how the experiences of some members of the public are overlooked in relation to clinical trial design and trial participation. As part of a knowledge transfer partnership (KTP), the authors were grante...

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Bibliographic Details
Main Authors: Julia Frost, Widening Engagement Patient Advisory Group, Jessica Mandizha, Steve Jones, Chantal vanden Dungen, Lauren Asare, Catherine Pope
Format: Article
Language:English
Published: Wiley 2025-04-01
Series:Health Expectations
Subjects:
idiopathic pulmonary fibrosis
market access
patient engagement
qualitative research
randomised controlled trials
rare diseases
Online Access:https://doi.org/10.1111/hex.70260
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https://doi.org/10.1111/hex.70260

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