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NCT06330350Recruiting

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

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

Source: ClinicalTrials.gov · Last updated 18 May 2025 · Not updated for over 12 months - ask the site whether it is still open

Brief summary (registry, in English)

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.

Status (registry)
Recruiting
Study type
Observational
Enrollment
25 (estimated)
First submitted
11 Mar 2024
Start date
1 Jan 2024
Primary completion date
31 Aug 2025
Lead sponsor
Maastricht University Medical Center
NCT number
NCT06330350

What you commit to

  • Study type: Observational
  • Planned participants: 25
  • From 1 Jan 2024 to the primary completion date, 31 Aug 2025
  • 1 site in 1 country
  • Visits and tests: ask the trial team, the registry does not list them

Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.

Who cannot take part

Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.

Other

  • Not being able to communicate verbally in Dutch or English

Who the study is looking for

  • 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)

Sex: All · Does not accept healthy volunteers

Full criteria on ClinicalTrials.gov

Sites (1)

Sites in registry order. Pick your city on the disease page to sort them by distance.

SiteCityCountrySite status
Maastricht University Medical Center
Coordinator of this site? Confirm its status
MaastrichtNetherlandsRecruiting

This page is information, not medical advice. Discuss any trial with your doctor.