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

Recruitingn/aAges any - anyAllMaastricht University Medical Center
NCT06330350 on ClinicalTrials.gov ↗
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In plain words

What the trial is, and whether it could suit you

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.

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📋 Eligibility rules (as published)
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
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What it tests

  • Qualitative interview
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Where

1 site
Maastricht University Medical Center
Maastricht, Netherlands
🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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