Understanding functional impairment in people with albinism
Functional Impairment in Albinism
This study is trying to learn about the everyday challenges people with albinism face, especially with their vision, by asking them about their experiences and thoughts on possible treatments.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 50 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Fondation Ophtalmologique Adolphe de Rothschild Research network |
| Locations | 1 site (Paris) |
| Trial ID | NCT06345976 on ClinicalTrials.gov |
What this trial studies
This observational study aims to gather insights from individuals with albinism regarding their functional impairments, particularly focusing on their experiences with glare and other visual challenges. Participants over the age of 18 will complete a questionnaire designed to capture their complaints and perspectives on emerging treatment options for their condition. The study seeks to enhance understanding of the specific needs of this population as treatment options develop.
Who should consider this trial
Good fit: Ideal candidates for this study are adults over 18 years old who have been diagnosed with albinism.
Not a fit: Patients who do not meet the diagnostic criteria for albinism or are unable to complete the questionnaire may not benefit from this study.
Why it matters
Potential benefit: If successful, this study could lead to improved treatment strategies that address the specific visual impairments experienced by patients with albinism.
How similar studies have performed: While there may be limited studies specifically targeting the functional impairments in albinism, emerging treatments for related conditions suggest a growing interest in this area.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * All patients with albinism * Patients \> 18 years of age * Non-opposition to study participation Exclusion Criteria: No diagnosis according to Kruijt et al. criteria Impossibility (visual, technological) of completing questionnaire
Where this trial is running
Paris
- Hôpital Fondation A. de Rothschild — Paris, France (Recruiting)
Study contacts
- Study coordinator: Amélie Yavchitz
- Email: ayavchitz@for.paris
- Phone: +33148036454
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.