REPRoDUCE
Research type
Research Study
Full title
REproductive health in PRimary ciliary dyskinesia: Developing User-informed Clinical and Educational resources (REPRoDUCE)
IRAS ID
361691
Contact name
Ying Cheong
Contact email
Sponsor organisation
University of Southampton
Duration of Study in the UK
2 years, 11 months, 31 days
Research summary
This study aims to co-develop and evaluate an online information resource for patients with primary ciliary dyskinesia and a toolkit for healthcare professionals on fertility and pregnancy in the context of this rare condition. We will recruit adults with PCD, healthcare professionals and representative from other stakeholder groups such as patient charities to participate in Phase 1 of this research study (n=10). They will be asked to participate in workshops to identify key priorities for information to be included in the resources. They will then be asked to participate in think aloud interviews and questionnaires to give feedback on the resource prototypes. In Phase 2 the resources will then be respectively evaluated using a pre- and post- use questionnaire in a group of healthcare professionals (n=10) and adults with primary ciliary dyskinesia (n=10).
REC name
London - Camberwell St Giles Research Ethics Committee
REC reference
25/PR/1288
Date of REC Opinion
15 Oct 2025
REC opinion
Further Information Favourable Opinion