Reproductive experiences and fertility in adults with primary ciliary dyskinesia
A Qualitative Study Investigating the Lived Experiences and Impact of Reproductive Issues in Adults With Primary Ciliary Dyskinesia
This project will talk with adults in the UK who have PCD to see how fertility, pregnancy, and parenthood have affected them.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 30 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | University Hospital Southampton NHS Foundation Trust Academic / other |
| Locations | 1 site (Southampton) |
| Trial ID | NCT07357558 on ClinicalTrials.gov |
What this trial studies
This observational qualitative project will conduct one-on-one interviews with adults in the United Kingdom who have a confirmed or likely diagnosis of primary ciliary dyskinesia. Interviews will explore personal experiences with fertility, conception, pregnancy, parenting, and interactions with healthcare services. Participants will give informed consent and may take part in in-person or remote interviews led by researchers at University Hospitals Southampton, with responses anonymized and analysed thematically. The study involves no medical intervention and aims to identify needs, barriers, and areas where care and support could be improved.
Who should consider this trial
Good fit: Adults (18+) living in the United Kingdom with a confirmed or likely diagnosis of PCD who are willing and able to provide informed consent and be interviewed.
Not a fit: People who do not live in the UK, who do not have PCD, who are unwilling to discuss reproductive experiences, or who are seeking direct clinical treatment are unlikely to gain direct medical benefit from participation.
Why it matters
Potential benefit: Findings could help improve reproductive counselling, services, and support for people with PCD.
How similar studies have performed: Qualitative research in PCD and other rare respiratory diseases has identified patient needs and influenced services, but targeted research on reproductive experiences in PCD is still limited.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Lives in United Kingdom * 'likely' or 'confirmed' diagnosis of PCD * able and willing to sign the consent form Exclusion Criteria: * unwilling to participate in the study * not meeting inclusion criteria
Where this trial is running
Southampton
- University Hospitals Southampton NHS Trust — Southampton, United Kingdom (Recruiting)
Study contacts
- Study coordinator: Lydia Newman
- Email: Lydia.newman@soton.ac.uk
- Phone: 02381206033
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.