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

Recruiting Observational Study
Quality of Life Ichthyosis Palmoplantar Keratoses Epidermolysis Bullosa Ectodermal Dysplasia Basal Cell Nevus Syndrome Birt-Hogg-Dube Syndrome Tuberous Sclerosis Cutis Laxa Albinism
No Placebo Group Every participant receives an active treatment — no one gets a placebo. No Study Drug Researchers observe your health over time — no experimental treatment is given.
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At a Glance
Sex
Any
Study type
Observational
Participants needed
25 (estimated)
Sponsor
Maastricht University Medical Center · Other
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About This Trial
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, de…
Trial Locations
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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 * Patient…
Contacts

Fauve C van Veen, MD

+31433877293

genodermatose@mumc.nl

CONTACT