A qualitative study of reproductive issues in PCD
Research type
Research Study
Full title
A qualitative study investigating the lived experiences and impact of reproductive issues in adults with primary ciliary dyskinesia
IRAS ID
359929
Contact name
Ying Cheong
Contact email
Sponsor organisation
University Hospital Southampton NHS Foundation Trust
Duration of Study in the UK
3 years, 0 months, 1 days
Research summary
Primary ciliary dyskinesia (PCD) is an inherited medical condition that stops tiny hair like structures in the body called cilia from moving properly. PCD is a rare condition but is more common in certain ethnic minority groups. PCD can cause lung, heart, sinus and ear disease as well as affecting peoples ability to have children. About 3 in 5 women and 4 in 5 men with PCD may have problems conceiving a child. Fertility problems can cause negative effects on relationships, wellbeing and finances. Research interviews with people with PCD and medical professionals showed that research into fertility is important and should be prioritised.
In this research study we are aiming to find out more about adults with PCD's experiences of fertility, the information and support they have received and how care might be improved in the future. We will do this by asking men and women with PCD to take part in interviews with a member of the research team. A total of 30 adults will be interviewed. Interviews will be held online and recorded before being written into text. The interview results will then be analysed by the research team.
REC name
London - Westminster Research Ethics Committee
REC reference
25/PR/1007
Date of REC Opinion
11 Aug 2025
REC opinion
Further Information Favourable Opinion