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

NCT06330350 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 25

Last updated 2025-05-18

No results posted yet for this 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.

Conditions

  • Quality of Life
  • Ichthyosis
  • Palmoplantar Keratoses
  • Epidermolysis Bullosa
  • Ectodermal Dysplasia
  • Basal Cell Nevus Syndrome
  • Birt-Hogg-Dube Syndrome
  • Tuberous Sclerosis
  • Cutis Laxa
  • Albinism

Interventions

OTHER

Qualitative interview

Gaining insight into the perspectives of patients with genodermatoses and their partners, and health care professionals concerning reproductive decision-making and counselling.

Sponsors & Collaborators

  • Maastricht University Medical Center

    lead OTHER

Principal Investigators

  • Antoni Gostynski, MD, PhD · Maastricht University Medical Center

Eligibility

Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2024-01-01
Primary Completion
2025-08-31
Completion
2025-12-31

Countries

  • Netherlands

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT06330350 on ClinicalTrials.gov