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 24, 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.
Contacts
Jennifer Cobb
Immunology at National Institute of Allergy and Infectious Diseases (NIAID)
Locations
Maastricht, Limburg, Netherlands
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