Understanding reproductive counseling for patients with skin genetic disorders

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

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.

Why it matters

Who can join: the full rules

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 it's running

• 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

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.