Understanding reproductive counseling for patients with skin genetic disorders
Investigating Perspectives of Patients With Genodermatosis and Healthcare Professionals on Reproductive Counselling
This study is trying to understand how people with skin genetic disorders and their partners make decisions about having children, while also looking at what doctors know and think about these choices.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 25 (estimated) |
| Sex | All |
| Sponsor | Maastricht University Medical Center Academic / other |
| Locations | 1 site (Maastricht, Limburg) |
| Trial ID | NCT06330350 on ClinicalTrials.gov |
What this trial studies
This observational study aims to gather insights from patients with genodermatoses and their partners regarding their reproductive decision-making processes. It will also explore the knowledge and perspectives of healthcare professionals involved in their care. Individual semi-structured qualitative interviews will be conducted to capture the experiences and needs of both patients and clinicians. The goal is to identify gaps in information and support related to reproductive options for affected individuals.
Who should consider this trial
Good fit: Ideal candidates include adult patients with confirmed genodermatosis who wish to have children, along with their partners.
Not a fit: Patients who cannot communicate verbally in Dutch or English will not benefit from this study.
Why it matters
Potential benefit: If successful, this study could enhance reproductive counseling and support for patients with genodermatoses, leading to better-informed decisions about family planning.
How similar studies have performed: While qualitative studies on reproductive counseling exist, this specific focus on genodermatoses is relatively novel and has not been extensively tested.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Adult patients with genodermatosis (i.e, keratinisation disorders, skin fragility diseases, ectodermal dysplasias, dermato-oncological syndromes, other genodermatoses) and a desire to have children, with if applicable his or her partner with a desire to have children * Patients with clinically and molecularly confirmed variant of a genodermatosis * Health care professionals involved with the care of genodermatology patients (e.g. clinical geneticists, dermatologists) Exclusion Criteria: * Not being able to communicate verbally in Dutch or English
Where this trial is running
Maastricht, Limburg
- Maastricht University Medical Center — Maastricht, Limburg, Netherlands (Recruiting)
Study contacts
- Principal investigator: Antoni Gostynski, MD, PhD — Maastricht University Medical Center
- Study coordinator: Fauve C van Veen, MD
- Email: genodermatose@mumc.nl
- Phone: +31433877293
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.