NCT06330350

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

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

• Status: Recruiting
• Phase: —
• Study type: Observational
• Enrollment: 25 (estimated)
• Sponsor: Maastricht University Medical Center · Academic / Other
• Sex: All
• Age: —
• Healthy volunteers: Not accepted

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

Type	Name	Description
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.

Timeline

• Start date: 2024-01-01
• Primary completion: 2025-08-31
• Completion: 2025-12-31
• First posted: 2024-03-26
• Last updated: 2025-05-18

Locations

1 site across 1 country: Netherlands