Investigating subfertility in Primary Ciliary Dyskinesia
Research type
Research Study
Full title
A questionnaire-based study investigating subfertility in primary ciliary dyskinesia
IRAS ID
327420
Contact name
Ying Cheong
Contact email
Sponsor organisation
University Hospital Southampton NHS Foundation Trust
Duration of Study in the UK
1 years, 6 months, 1 days
Research summary
Primary ciliary dyskinesia (PCD) is an inherited condition which causes problems with the normal movement of motile cilia. Motile cilia are microscopic hairs that beat in lungs, inner ear, lining of the womb and fallopian tubes. PCD can also affect the function of sperm. Difficulties getting pregnant or conceiving (fertility) are commonly reported by people with PCD but the exact rates of subfertility in this population is unknown. Although subfertility is a common feature of PCD, due to a lack of evidence it is unclear to how to counsel patients on their likelihood of fertility problems or which fertility treatments will be most effective. This project aims to explore self-reported subfertility problems and use of fertility treatments in adults with PCD, describe what fertility services and support are currently accessed, and characterise the UK PCD population with self-reported sub-fertility. The study will be advertised through patient support groups and NHS clinics. A national online questionnaire will be conducted in adults aged over 18 years living in the UK with a diagnosis of PCD. If consent is given data will also subsequently be gathered from the national PCD database. At least 100 participants will be recruited and complete the study. Data will be analysed using statistical software (SPSS) and research findings summarised. This study will inform key uncertainties about experiences of infertility and fertility treatments in men and women with PCD, reported fertility outcomes in people with PCD and describe disease characteristics in this population. The findings of this study will be communicated to stakeholders including the participants, clinicians, and researchers in this field though conference presentations and publication in the public domain.
REC name
London - Brent Research Ethics Committee
REC reference
24/LO/0052
Date of REC Opinion
19 Jan 2024
REC opinion
Favourable Opinion