Developing Resource Interventions for Healthcare Professionals and Patients to Improve Knowledge About Fertility in Primary Ciliary Dyskinesia

ConditionsPrimary Ciliary Dyskinesia (PCD)Fertility Pregnancy Health Information Exchange

Trial statusNot yet recruiting

Trial phaseNot applicable

Trial typeInterventional

Biological sexAll

Age18+

SponsorUniversity of Southampton

About this trial

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.

Eligibility criteria

This trial does not accept healthy volunteers

Qualifiers

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

Disqualifiers

Unwilling to participate in the study

Not meeting inclusion criteria

Unable to understand or unwilling to sign the informed participant consent prior to participation

Trial design

Design model

Parallel

Treatments tested in this trial

Online educational resource
Other intervention
Co-developed educational resource for patients
Toolkit for healthcare professionals
Other intervention
co-developed online educational toolkit for healthcare professionals

Treatment groups

30 Participants

are divided into 2 treatment groups

Group A: Use of educational resource for patientsExperimental treatment 1 intervention

Group B: Use of educational resource for healthcare professionalsExperimental treatment 1 intervention

Trial outcomes

Primary outcomes

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.

Time frame

Duration of study (up to 3 years)

Locations

This trial has no locations.

Sponsors and contacts

Click on the lead sponsor to view all of their trials.

University of Southampton

Lead sponsor

University of Cardiff

Collaborator

University Hospital Southampton NHS Foundation Trust