Patients' research priorities and participation in primary ciliary dyskinesia research.

ABSTRACT:

Introduction

People living with chronic diseases can provide a unique perspective for research that often differs from that of healthcare professionals. This is particularly important in rare diseases like primary ciliary dyskinesia (PCD), with many knowledge gaps and limited research resources. We aimed to assess participation of patients and caregivers in PCD research and identify their research priorities in a mixed-method study.

Methods

We conducted in-depth, semistructured interviews with adults and adolescents with PCD, and caregivers of children with PCD. After verbatim transcription and thematic analysis, we developed an anonymous online survey, translated it into eight languages and circulated it widely in collaboration with PCD support groups worldwide and the Euro

SUBMITTER: Lam YT 

PROVIDER: S-EPMC12706200 | biostudies-literature | 2025 Dec

REPOSITORIES: biostudies-literature