Clinical trial · Observational
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
- Retrieved
- Sep 8, 2026
- Layer
- normalized (units and labels harmonized; values unchanged)
- Run
- ING-CLINICALTRIALS-20260908-000001
Summary
Brief summary (as posted)
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.
Conditions
Conditions (10)
Free-text conditions as registered, with the CancerIndex entity they were reconciled to and the match type.
| Condition (as posted) | Mapped entity | Match | Confidence |
|---|---|---|---|
| Albinism | — | UNRESOLVED | — |
| Basal Cell Nevus Syndrome | — | UNRESOLVED | — |
| Birt-Hogg-Dube Syndrome | — | UNRESOLVED | — |
| Cutis Laxa | — | UNRESOLVED | — |
| Ectodermal Dysplasia | — | UNRESOLVED | — |
| Epidermolysis Bullosa | — | UNRESOLVED | — |
| Ichthyosis | — | UNRESOLVED | — |
| Palmoplantar Keratoses | — | UNRESOLVED | — |
| Quality of Life | — | UNRESOLVED | — |
| Tuberous Sclerosis |
Interventions
Interventions (1)
| Intervention | Type | Mapped drug | Match |
|---|---|---|---|
| Qualitative interview | Other | — | UNRESOLVED |
Design
Arms and outcomes
Arms (6)
- label
- Keratinisation disorders
- description
- Keratinisation disorders comprise a heterogeneous group characterised by abnormal epidermal differentiation, such as variants of ichthyosis and palmoplantar keratoderma.
- interventionNames
- Other: Qualitative interview
- label
- Skin fragility disorders
- description
- Skin fragility disorders comprise a group of inherited blistering diseases, such as variants of epidermolysis bullosa.
- interventionNames
- Other: Qualitative interview
- label
- Ectodermal dysplasias
- description
- Ectodermal dysplasias consists of multiple inherited disorders that are characterised by abnormalities of the embryonic ectoderm, such as hair, nails, sweat glands or teeth.
- interventionNames
Eligibility
Eligibility (as posted)
- Sex
- All
Show eligibility criteria text
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
References
Publications (0)
Data not yet available