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Clinical Trial Details — Status: Recruiting

Administrative data

NCT number NCT06330350
Other study ID # METC 2023-0193
Secondary ID
Status Recruiting
Phase
First received
Last updated
Start date January 1, 2024
Est. completion date December 31, 2025

Study information

Verified date March 2024
Source Maastricht University Medical Center
Contact Fauve C van Veen, MD
Phone +31433877293
Email genodermatose@mumc.nl
Is FDA regulated No
Health authority
Study type Observational

Clinical Trial Summary

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.


Recruitment information / eligibility

Status Recruiting
Enrollment 25
Est. completion date December 31, 2025
Est. primary completion date August 31, 2025
Accepts healthy volunteers No
Gender All
Age group N/A and older
Eligibility 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

Study Design


Intervention

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.

Locations

Country Name City State
Netherlands Maastricht University Medical Center Maastricht Limburg

Sponsors (1)

Lead Sponsor Collaborator
Maastricht University Medical Center

Country where clinical trial is conducted

Netherlands, 

Outcome

Type Measure Description Time frame Safety issue
Primary Assessment of perspectives of affected patients + partners and of healthcare professionals concerning reproductive decision-making Qualitative evaluation of the perspectives and needs of patients with genodermatoses and their partners who wish to have children, as well as clinicians involved in the decision-making process and the consideration of reproductive options, such as prenatal diagnosis (PND), pre-implantation genetic testing (PGT), adoption, the use of donor gametes, refraining from having children, natural pregnancy without genetic testing or foster care. And assessing their level of knowledge on these reproductive options. 1 day
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