Understanding the effects of congenital ichthyosis on patients
Exploring Patient Reported Outcomes in Inherited Ichthyosis
This study is trying to find out if people with congenital ichthyosis have other symptoms besides skin problems, like joint pain or effects on their daily life, by using questionnaires to gather their experiences.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 20 (estimated) |
| Ages | 16 Years and up |
| Sex | All |
| Sponsor | Maastricht University Medical Center Academic / other |
| Locations | 1 site (Maastricht) |
| Trial ID | NCT06123091 on ClinicalTrials.gov |
What this trial studies
This observational study aims to investigate the presence of extracutaneous manifestations in patients with congenital ichthyosis by utilizing questionnaires to gather patient-reported outcomes. The primary focus is to determine whether patients experience additional symptoms beyond skin-related issues, such as joint pain or quality of life impacts. The study also seeks to identify knowledge gaps in current patient management and areas for improvement in care. Participants must be 16 years or older and have a confirmed diagnosis of congenital ichthyosis.
Who should consider this trial
Good fit: Ideal candidates for this study are individuals aged 16 and older with clinically and genetically confirmed congenital ichthyosis.
Not a fit: Patients under 16 years of age or those unable to read Dutch may not benefit from this study.
Why it matters
Potential benefit: If successful, this study could enhance understanding of the broader impacts of congenital ichthyosis on patients, leading to improved management and care strategies.
How similar studies have performed: While there is limited research specifically on extracutaneous manifestations in congenital ichthyosis, similar studies in related conditions have shown success in identifying patient-reported outcomes.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * 16 years and older * Clinically and genetically confirmed congenital ichthyosis Exclusion Criteria: * \<16 years of age * Not able to read Dutch * Not able to fill in questionnaires online or in print
Where this trial is running
Maastricht
- Maastricht University Medical Centre + — Maastricht, Netherlands (Recruiting)
Study contacts
- Principal investigator: Antoni C Gostynski, MD, PhD — Maastricht UMC+
- Study coordinator: Vanya Rossel, MD
- Email: vanya.rossel@mumc.nl
- Phone: +31(0)43-3877295
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.