Actively Recruiting

All Genders
ID06330350

Investigating Perspectives of Patients With Genodermatosis and Healthcare Professionals on Reproductive Counselling

Led by Maastricht University Medical Center · Updated on 2025-05-18

25

Participants Needed

1

Research Sites

17 weeks

Total Duration

On this page

AI-Summary

What this Trial Is About

This observational study focuses on patients with genodermatoses and their partners who wish to have children, exploring their decision-making process and views on reproductive options. It also aims to understand how well healthcare professionals such as clinical geneticists and dermatologists are informed about these reproductive choices and how they counsel patients. The study covers various genodermatoses groups including keratinisation disorders, skin fragility diseases, ectodermal dysplasias, dermato-oncogenetic syndromes, and others. Participants will take part in individual semi-structured qualitative interviews to share their perspectives on reproductive decision-making and counselling. The study includes affected patients and partners, as well as healthcare professionals involved in the care of genodermatosis patients. These interviews aim to gather detailed insights from each group regarding their knowledge and views on reproductive options. During the study, researchers will assess the perspectives of patients, partners, and healthcare providers concerning reproductive decisions. This assessment will take place over one day per participant. The study is led by Maastricht University Medical Center and involves no treatment interventions, focusing solely on interviews to collect qualitative data. Participation involves sharing personal views and experiences related to reproductive counselling.

CONDITIONS

Brief Title

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

Who Can Participate

All Genders

Eligibility Criteria

Eligible

You may qualify if you...

  • Adult patients with genodermatosis (keratinisation disorders, skin fragility diseases, ectodermal dysplasias, dermato-oncological syndromes, or other genodermatoses) who wish to have children
  • If applicable, the partner of a patient who wishes to have children
  • Patients with clinically and molecularly confirmed genodermatosis
  • Healthcare professionals involved in the care of genodermatosis patients (e.g., clinical geneticists, dermatologists)
Not Eligible

You will not qualify if you...

  • Inability to communicate verbally in Dutch or English

AI-Screening

AI-Powered Screening

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Your Study Journey

Screening

Duration - 2 to 4 weeks

Participants are screened for eligibility to participate in the trial.

1 visit (in-person or remote)

Qualitative Interview

Duration - 1 day

Participants take part in a qualitative interview to share their perspectives on reproductive decision-making and counselling related to genodermatoses.

1 interview session (in-person or remote)

Trial Site Locations

Total: 1 location

1

Maastricht University Medical Center

Maastricht, Limburg, Netherlands, 6202 AZ

Actively Recruiting

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Research Team

F

Fauve C van Veen, MD

How is the study designed?

Study Type

OBSERVATIONAL

Masking

N/A

Allocation

N/A

Model

N/A

Primary Purpose

N/A

Number of Arms

6

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