RecruitingNCT06330350

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

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

Sponsor

Maastricht University Medical Center

Enrollment

25 participants

Start Date

Jan 1, 2024

Study Type

OBSERVATIONAL

Conditions

Quality of Life Tuberous Sclerosis Birt-Hogg-Dube Syndrome Ichthyosis Palmoplantar Keratoses Epidermolysis Bullosa Ectodermal Dysplasia Basal Cell Nevus Syndrome Cutis Laxa Albinism

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.

Eligibility

Plain Language Summary

Simplified for easier understanding

This study is a qualitative research project exploring how people with inherited skin diseases (called genodermatoses) and their healthcare providers experience discussions about reproduction and family planning. Genodermatoses are genetic conditions affecting the skin that can be passed on to children, and many patients and families have questions about this. Researchers want to better understand needs and improve counseling practices. **You may be eligible if:** - You are an adult with a clinically and genetically confirmed genodermatosis (an inherited skin condition such as a keratinization disorder, skin fragility disease, ectodermal dysplasia, or similar), and you have a desire to have children (and/or your partner does) - OR you are a healthcare professional involved in caring for patients with genodermatoses (such as a clinical geneticist or dermatologist) **You may NOT be eligible if:** - You are unable to communicate verbally in Dutch or English Talk to your doctor to see if this trial is right for you.

This summary was AI-generated to explain the trial in plain language. It is not medical advice. Always discuss eligibility with your doctor before enrolling in a clinical trial.

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Interventions

OTHERQualitative interview

Gaining insight into the perspectives of patients with genodermatoses and their partners, and health care professionals concerning reproductive decision-making and counselling.