Developing Resource Interventions for Healthcare Professionals and Patients to Improve Knowledge About Fertility in Primary Ciliary Dyskinesia
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: Online educational resource, Toolkit for healthcare professionals.
- Who it may be relevant to
- Registry conditions: Primary Ciliary Dyskinesia (PCD), Fertility, Pregnancy, Health Information Exchange. Basic parameters: from 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- Center list to be confirmed — check the primary protocol.
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Official title
REproductive Health in PRimary Ciliary Dyskinesia: Developing User-informed Clinical and Educational Resources (REPRoDUCE)
Overview
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.
Detailed description
The study investigators will co-develop an online educational animation and text resource for patients and the public about PCD and fertility and pregnancy.
Development of patient resource:
The study investigators will conduct workshops with a group of approximately ten people including additional PPI representatives (adults with lived experience of PCD), representatives from PCD Support UK and medical professionals specialising in PCD. In stage 1 of the resource development, the study investigators will conduct an online workshop to identify priorities for information for inclusion in the resource. In stage 2 the study investigators will create a resource prototype based on the information gained in stage 1. In stage 3 the study investigators will conduct and record 1:1 online think aloud interviews to capture real-time reactions and gain evaluation of the resource prototype to identify areas for improvement. In stage 4, the study investigators will make further resource modifications. In stage 5 the intervention will be tested in a sample of men and women with PCD (n=10). The study investigators will then conduct an online quiz to measure pre- and post- resource use knowledge about PCD, fertility and pregnancy, and collect suggestions for improvement via a survey form. Feedback from stage 5 will be incorporated into the final resource prior to dissemination.
The resource will be translated into non-English languages spoken in the UK to aid inclusion of a wider audience.
Co-development of toolkit for medical professionals:
The study investigators will co-develop an online educational toolkit for medical professionals about fertility and pregnancy in patients with PCD. The study investigators will utilise the same group of approximately ten people including PPI representatives, representatives from PCD Support UK and medical professionals specialising in PCD as above. The study investigators will follow the above stages 1-4 for development of the toolkit. In stage 5, the study investigators will test the intervention in a sample of non-PCD specialists (n=10). During this stage an online quiz will be conducted to measure pre- and post- toolkit use knowledge about PCD, fertility and pregnancy, and collect suggestions for improvement via a survey form. Feedback from stage 5 will be incorporated into the final resource prior to dissemination.
Interventions
- Other Online educational resource
Co-developed educational resource for patients - Other Toolkit for healthcare professionals
co-developed online educational toolkit for healthcare professionals
Primary outcome measures
- A resource for patients and a toolkit for medical professionals [Time frame: Duration of study (up to 3 years)]
Eligibility criteria
Inclusion criteria
- 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
Exclusion criteria
- Unwilling to participate in the study
- Not meeting inclusion criteria
- Unable to understand or unwilling to sign the informed participant consent prior to participation
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Allocation
- Non-randomized
- Model
- Parallel assignment
- Masking
- Open label
- Primary purpose
- Other
Study locations
Center list to be confirmed — check the primary protocol.
Identifiers
NCT: NCT07531277 · 107544