Primary Ciliary Dyskinesia (PCD)NCT07357558
A Qualitative Study Investigating the Lived Experiences and Impact of Reproductive Issues in Adults With Primary Ciliary Dyskinesia
An observational study of Primary Ciliary Dyskinesia (PCD), run by University Hospital Southampton NHS Foundation Trust at 1 site in United Kingdom.
Trial summary
Study involving undertaking research interviews with adults who have primary ciliary dyskinesia in the UK about their views and experiences of fertility, pregnancy and parenthood Read more about this study
- Who is it for?
- Ages 18 years and older
- Conditions the study is for
- Primary Ciliary Dyskinesia (PCD)
- What is being tested?
- Interview only
- How many people
- 30 participants
- Where
- 1 siteUnited Kingdom
- Study dates
- 2 Sep 2025to 31 Jul 2026
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- No healthy volunteers
- Adult, Older adult
Study population: Adults with primary ciliary dyskinesia
Who may be able to join
- Lives in United Kingdom
- 'likely' or 'confirmed' diagnosis of PCD
- able and willing to sign the consent form
Who cannot join
- unwilling to participate in the study
- not meeting inclusion criteria
Trial locations and contacts
1 site in 1 country. Contact the study team or a site near you to ask about taking part.
United Kingdom1 site, 1 recruiting
- Recruiting
University Hospitals Southampton NHS Trust
Southampton
Lydia Newman, Lydia.newman@soton.ac.uk
Ying Cheong, y.cheong@soton.ac.uk
About this study
Study involving undertaking research interviews with adults who have primary ciliary dyskinesia in the UK about their views and experiences of fertility, pregnancy and parenthood
- Conditions
- Primary Ciliary Dyskinesia (PCD)
- Being tested
- Interview only
- Keywords
- fertility, pregnancy, reproduction, parenthood, qualitative, interviews
- Medical subject headings
- Ciliary Motility Disorders
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
Interview onlyOther
No intervention
What is being measured
The primary outcome is the main question the study is designed to answer.
Qualitative description of views and experiences of participants
Explored during study interview
Measured: Explored during study interview (day 1)
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted22 Jan 2026
- Study start2 Sep 2025
- Primary completion31 Jul 2026 (estimated)
- Study completion31 Jul 2026 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Primary Ciliary Dyskinesia (PCD)Studies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Other
- Time perspective
- Prospective
- Enrolment
- 30 participants (estimated)
Sponsor and investigators
- Lead sponsor
- University Hospital Southampton NHS Foundation Trust
- Sponsor type
- University, hospital or other
- Collaborators
- University of Southampton
- Responsible party
- Sponsor
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT07357558
- Sponsor's protocol ID
- RHM O&G0332
- Status last verified
- Jan 2026
- First submitted
- 5 Jan 2026
- Last updated
- 22 Jan 2026
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- Undecided
Study at a glance
From the registry record, last updated by the sponsor on 22 Jan 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- A Qualitative Study Investigating the Lived Experiences and Impact of Reproductive Issues in Adults With Primary Ciliary Dyskinesia
- ClinicalTrials.gov ID
- NCT07357558
- Acronym / sponsor ID
- RHM O&G0332
- Conditions
- Primary Ciliary Dyskinesia (PCD)
- Keywords
- fertility, pregnancy, reproduction, parenthood, qualitative, interviews
- Study type
- Observational
- Recruitment status
- Recruiting
- Enrolment
- 30 participants (estimated)
- Lead sponsor
- University Hospital Southampton NHS Foundation TrustUniversity, hospital or other
- Collaborators
- University of Southampton
- Study start
- 2 Sep 2025 (actual)
- Primary completion
- 31 Jul 2026 (estimated)
- Study completion
- 31 Jul 2026 (estimated)
- First posted
- 22 Jan 2026 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
Study involving undertaking research interviews with adults who have primary ciliary dyskinesia in the UK about their views and experiences of fertility, pregnancy and parenthood
Study design
- Observational model
- Other
- Time perspective
- Prospective
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
- Study population
- Adults with primary ciliary dyskinesia
Key inclusion criteria (3 listed)
- Lives in United Kingdom
- 'likely' or 'confirmed' diagnosis of PCD
- able and willing to sign the consent form
Key exclusion criteria (2 listed)
- unwilling to participate in the study
- not meeting inclusion criteria
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| Interview onlyNo intervention | Other | – |
Primary outcome
Qualitative description of views and experiences of participants
Time frame: Explored during study interview (day 1)
Explored during study interview
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 22 Jan 2026.
- Individual participant dataSharing planned: Undecided
Related trials for Primary Ciliary Dyskinesia (PCD)
RecruitingObservational study
Natural History of Bronchiectasis
Bronchiectasis, Cystic Fibrosis
RecruitingObservational study
Comparison of Individuals With Primary Ciliary Dyskinesia and Healthy Controls
Primary Ciliary Dyskinesia (PCD)
RecruitingObservational study
Utility of PCD Diagnostics to Improve Clinical Care
Primary Ciliary Dyskinesia
Recruiting
Primary Ciliary Dyskinesia in Adult Bronchiectasis
Idiopathic Bronchiectasis
Not yet recruitingObservational study
Malnutrition and Sarcopenia Among Primary Ciliary Dyskinesia
Primary Ciliary Dyskinesia (PCD)
Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Primary Ciliary Dyskinesia (PCD), run by University Hospital Southampton NHS Foundation Trust at 1 site in United Kingdom.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 3 inclusion and 2 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: looking for participants now, as of the sponsor's last update on 22 Jan 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in United Kingdom. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Lydia Newman (02381206033, Lydia.newman@soton.ac.uk), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Qualitative description of views and experiences of participants (time frame: Explored during study interview (day 1)). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 22 Jan 2026.