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Search / Trial NCT06330350

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

Launched by MAASTRICHT UNIVERSITY MEDICAL CENTER · Mar 18, 2024

Trial Information

Current as of July 23, 2025

Recruiting

Keywords

ClinConnect Summary

This clinical trial is focused on understanding the thoughts and needs of patients with specific skin conditions, known as genodermatoses, and their partners who want to have children. The study aims to explore how well these patients and their partners understand their reproductive options and the decision-making process they go through. Additionally, the researchers want to learn about the knowledge and views of healthcare professionals involved in caring for these patients, such as dermatologists and geneticists. They will gather this information through individual interviews with both the patients (and their partners) and the healthcare providers.

To participate in this study, you should be an adult diagnosed with a genodermatosis and interested in having children, and if applicable, your partner should also share this desire. Healthcare professionals who work with these patients can also join the study. Participants should be comfortable communicating in English or Dutch. If you decide to take part, you can expect to share your experiences and perspectives in a supportive setting, helping to improve understanding and care for others in similar situations. This research is currently recruiting participants, and your input could greatly benefit future families facing these challenges.

Gender

ALL

Eligibility 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

About Maastricht University Medical Center

Maastricht University Medical Center (MUMC+) is a leading academic medical center in the Netherlands, renowned for its commitment to advancing healthcare through innovative research and education. As a prominent sponsor of clinical trials, MUMC+ integrates cutting-edge scientific inquiry with clinical practice, focusing on a wide range of medical disciplines. The center emphasizes collaboration among multidisciplinary teams, fostering an environment that promotes excellence in patient care and the translation of research findings into clinical applications. MUMC+ is dedicated to improving health outcomes and enhancing quality of life through rigorous clinical investigations and the development of novel therapeutic strategies.

Locations

Maastricht, Limburg, Netherlands

Patients applied

0 patients applied

Trial Officials

Antoni Gostynski, MD, PhD

Principal Investigator

Maastricht University Medical Center

Timeline

First submit

Trial launched

Trial updated

Estimated completion

Not reported