NCT07531277

Brief Summary

This project will involve working with people with PCD and medical professionals to develop resources that will help patients and the people providing their care to better understand fertility and pregnancy safety in people with this condition.

Trial Health

65
Monitor

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
30

participants targeted

Target at below P25 for not_applicable

Timeline
36mo left

Started Apr 2026

Typical duration for not_applicable

Status
not yet recruiting

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Progress1%
Apr 2026Mar 2029

First Submitted

Initial submission to the registry

March 24, 2026

Completed
8 days until next milestone

Study Start

First participant enrolled

April 1, 2026

Completed
14 days until next milestone

First Posted

Study publicly available on registry

April 15, 2026

Completed
3 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

March 31, 2029

Expected
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

March 31, 2029

Last Updated

April 15, 2026

Status Verified

March 1, 2026

Enrollment Period

3 years

First QC Date

March 24, 2026

Last Update Submit

April 8, 2026

Conditions

Outcome Measures

Primary Outcomes (1)

  • A resource for patients and a toolkit for medical professionals

    1. Development of a resource for patients and toolkit for healthcare professionals 2. Qualitative and quantitive participant data on the acceptability and usefulness of above resources.

    Duration of study (up to 3 years)

Study Arms (2)

Use of educational resource for patients

EXPERIMENTAL

Online resource use by adults with PCD

Other: Online educational resource

Use of educational resource for healthcare professionals

EXPERIMENTAL

Use of online toolkit by healthcare professionals

Other: Toolkit for healthcare professionals

Interventions

Co-developed educational resource for patients

Use of educational resource for patients

co-developed online educational toolkit for healthcare professionals

Use of educational resource for healthcare professionals

Eligibility Criteria

Age18 Years+
Sexall
Healthy VolunteersNo
Age GroupsAdult (18-64), Older Adult (65+)

You may qualify if:

  • Aged 18 years or older
  • 'Highly likely' or confirmed diagnosis of Primary Ciliary dyskinesia, or being a healthcare professional, or representative from a stakeholder group e.g. patient led charity
  • Able to understand and willing to sign the informed participant consent prior to participation

You may not qualify if:

  • Unwilling to participate in the study
  • Unable to understand or unwilling to sign the informed participant consent prior to participation

Contact the study team to confirm eligibility.

Sponsors & Collaborators

MeSH Terms

Conditions

Ciliary Motility Disorders

Interventions

Health Personnel

Condition Hierarchy (Ancestors)

Respiratory Tract DiseasesOtorhinolaryngologic DiseasesCiliopathiesAbnormalities, MultipleCongenital AbnormalitiesCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesGenetic Diseases, Inborn

Intervention Hierarchy (Ancestors)

Health Care Facilities Workforce and Services

Central Study Contacts

Study Design

Study Type
interventional
Phase
not applicable
Allocation
NON RANDOMIZED
Masking
NONE
Purpose
OTHER
Intervention Model
PARALLEL
Sponsor Type
OTHER
Responsible Party
SPONSOR

Study Record Dates

First Submitted

March 24, 2026

First Posted

April 15, 2026

Study Start

April 1, 2026

Primary Completion (Estimated)

March 31, 2029

Study Completion (Estimated)

March 31, 2029

Last Updated

April 15, 2026

Record last verified: 2026-03