Qualitative Study in Patients With Genodermatoses and Healthcare Professionals on Reproductive Counselling

Last updated: May 16, 2025
Sponsor: Maastricht University Medical Center
Overall Status: Active - Recruiting

Phase

N/A

Condition

Epidermolysis Bullosa

Basal Cell Carcinoma

Ichthyosis

Treatment

Qualitative interview

Clinical Study ID

NCT06330350
METC 2023-0193
  • All Genders

Study Summary

The goal of this observational study is to understand the perspectives and needs of patients with genodermatoses and their partners who wish to have children, regarding their decision-making process and their consideration of reproductive options. Additionally, the investigators aim to investigate the level of knowledge and perspectives of healthcare professionals (such as clinical geneticists, dermatologists and other clinicians involved), and want to explore to what extent patients and their partners are well informed about these reproductive options. To achieve this, the investigators will conduct individual semi-structured qualitative interviews with participants affected by genodermatoses (and their partners) and with healthcare professionals.

Eligibility Criteria

Inclusion

Inclusion Criteria:

  • Adult patients with genodermatosis (i.e, keratinisation disorders, skin fragilitydiseases, ectodermal dysplasias, dermato-oncological syndromes, othergenodermatoses) and a desire to have children, with if applicable his or her partnerwith 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

Exclusion Criteria:

  • Not being able to communicate verbally in Dutch or English

Study Design

Total Participants: 25
Treatment Group(s): 1
Primary Treatment: Qualitative interview
Phase:
Study Start date:
January 01, 2024
Estimated Completion Date:
December 31, 2025

Connect with a study center

  • Maastricht University Medical Center

    Maastricht, Limburg 6202 AZ
    Netherlands

    Active - Recruiting

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