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, 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.
Eligibility criteria
Qualifiers
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)
Disqualifiers
Not being able to communicate verbally in Dutch or English
Trial design
Treatments tested in this trial
- Qualitative interview
Treatment groups
6
Treatment groupsSee each treatment group below.