- ICH GCP
- US Clinical Trials Registry
- Clinical Trial NCT07357558
A Qualitative Study Investigating the Lived Experiences and Impact of Reproductive Issues in Adults With Primary Ciliary Dyskinesia
January 21, 2026 updated by: University Hospital Southampton NHS Foundation Trust
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 Overview
Status
Recruiting
Conditions
Intervention / Treatment
Study Type
Observational
Enrollment (Estimated)
30
Contacts and Locations
This section provides the contact details for those conducting the study, and information on where this study is being conducted.
Study Contact
- Name: Lydia Newman
- Phone Number: 02381206033
- Email: Lydia.newman@soton.ac.uk
Study Locations
-
-
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Southampton, United Kingdom
- Recruiting
- University Hospitals Southampton NHS Trust
-
Contact:
- Lydia Newman
- Email: Lydia.newman@soton.ac.uk
-
Contact:
- Ying Cheong
- Email: Y.Cheong@soton.ac.uk
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-
Participation Criteria
Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.
Eligibility Criteria
Ages Eligible for Study
- Adult
- Older Adult
Accepts Healthy Volunteers
No
Sampling Method
Non-Probability Sample
Study Population
Adults with primary ciliary dyskinesia
Description
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
Study Plan
This section provides details of the study plan, including how the study is designed and what the study is measuring.
How is the study designed?
Design Details
What is the study measuring?
Primary Outcome Measures
Outcome Measure |
Measure Description |
Time Frame |
|---|---|---|
|
Qualitative description of views and experiences of participants
Time Frame: Explored during study interview (day 1)
|
Explored during study interview
|
Explored during study interview (day 1)
|
Collaborators and Investigators
This is where you will find people and organizations involved with this study.
Collaborators
Study record dates
These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.
Study Major Dates
Study Start (Actual)
September 2, 2025
Primary Completion (Estimated)
July 31, 2026
Study Completion (Estimated)
July 31, 2026
Study Registration Dates
First Submitted
January 5, 2026
First Submitted That Met QC Criteria
January 21, 2026
First Posted (Actual)
January 22, 2026
Study Record Updates
Last Update Posted (Actual)
January 22, 2026
Last Update Submitted That Met QC Criteria
January 21, 2026
Last Verified
January 1, 2026
More Information
Terms related to this study
Additional Relevant MeSH Terms
Other Study ID Numbers
- RHM O&G0332
Plan for Individual participant data (IPD)
Plan to Share Individual Participant Data (IPD)?
UNDECIDED
Drug and device information, study documents
Studies a U.S. FDA-regulated drug product
No
Studies a U.S. FDA-regulated device product
No
This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.
Clinical Trials on Primary Ciliary Dyskinesia (PCD)
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University of SouthamptonUniversity Hospital Southampton NHS Foundation Trust; University of CardiffNot yet recruitingPregnancy | Fertility | Health Information Exchange | Primary Ciliary Dyskinesia (PCD)
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University Hospital MuensterAssistance Publique - Hôpitaux de Paris; University of Pisa; Medical University... and other collaboratorsRecruitingPrimary Ciliary Dyskinesia (PCD)Germany
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University of ThessalyAttikon HospitalNot yet recruitingNon Cystic Fibrosis Bronchiectasis | Primary Ciliary Dyskinesia (PCD) | Protracted Bacterial Bronchitis | Chronic Suppurative Lung DiseaseGreece
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University of CyprusHorizon 2020 - European CommissionEnrolling by invitationCystic Fibrosis (CF) | Primary Ciliary Dyskinesia (PCD)Cyprus
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Gazi UniversityCompletedCystic Fibrosis (CF) | Primary Ciliary Dyskinesia (PCD)Turkey (Türkiye)
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Gazi UniversityCompletedCystic Fibrosis (CF) | Primary Ciliary Dyskinesia (PCD)Turkey (Türkiye)
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Aerocrine ABCompletedPCDFrance, United States, Denmark, Germany
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ReCode TherapeuticsCompletedPrimary Ciliary Dyskinesia (PCD)Denmark, United States, Germany
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University of Alabama at BirminghamMassachusetts General Hospital; National Heart, Lung, and Blood Institute (NHLBI)Active, not recruitingCovid19 | Sinusitis | Cystic Fibrosis | COPD | PCD - Primary Ciliary DyskinesiaUnited States
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Indiana UniversityRecruitingHealthy | Primary Ciliary DyskinesiaUnited States
Clinical Trials on Interview only
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Mayo ClinicNot yet recruitingSpontaneous Coronary Artery DissectionUnited States
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Vanderbilt UniversityNational Institutes of Health (NIH)CompletedHelp-Seeking Behavior
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Centre Leon BerardInstitut d'Hématologie et d'Oncologie Pédiatrique; Fondation La Roche PosayNot yet recruitingAcute Lymphoblastic Leukemia, Pediatric
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Brigham and Women's HospitalPatient-Centered Outcomes Research Institute; Foundation for Informed Medical...UnknownHypertension | Medication Adherence | Decision Making, Shared | Patient-Centered Outcomes ResearchUnited States
-
ElsanCompletedNeuropathic PainFrance
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George Mason UniversityNational Institute on Drug Abuse (NIDA)UnknownSubstance Abuse | HIV Risk | Empathy | Guilt | Shame | Criminogenic ThinkingUnited States
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Royal Cornwall Hospitals TrustUniversity of OxfordRecruitingAntibiotic Prescribing is the Study Focus (no Condition)United Kingdom
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Wayne State UniversityCompleted
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Centre Hospitalier Universitaire de BesanconDirection Générale de l'Offre de SoinsNot yet recruiting