Qualitative Study in Patients With Genodermatoses and Healthcare Professionals on Reproductive Counselling
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: Qualitative interview.
- Who it may be relevant to
- Registry conditions: Quality of Life, Ichthyosis, Palmoplantar Keratoses, Epidermolysis Bullosa. Basic parameters: No limits · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- Netherlands
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
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Official title
Investigating Perspectives of Patients With Genodermatosis and Healthcare Professionals on Reproductive Counselling
Overview
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.
Interventions
- 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.
Primary outcome measures
- Assessment of perspectives of affected patients + partners and of healthcare professionals concerning reproductive decision-making [Time frame: 1 day]
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
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Cohort
Study locations
Netherlands · 1 center
- Maastricht University Medical Center — Maastricht
Identifiers
NCT: NCT06330350 · METC 2023-0193