Understanding functional impairment in people with albinism
Official title: Functional Impairment in Albinism
Run by Fondation Ophtalmologique Adolphe de Rothschild · NCT06345976 · Data updated 2026-11-12
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 |
|---|---|
| Ages | 18 Years and up |
| Sex | All |
| Enrollment | 50 (estimated) |
| Sponsor | Fondation Ophtalmologique Adolphe de Rothschild Research network |
| Locations | 1 site (Paris) |
| Status | Recruiting |
| Started | October 1, 2024 |
| Main results expected | October 1, 2025 |
| Study ends | October 1, 2025 |
| Registry record updated | February 13, 2025 |
| Trial ID | NCT06345976 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this study are adults over 18 years old who have been diagnosed with albinism.
✕Probably 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.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
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.
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 gone: 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.
Who can join: the full rules
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 it's running
-
Hôpital Fondation A. de Rothschild
Paris, France Recruiting
Study contacts
- Study coordinator: Amélie Yavchitz
- Email: ayavchitz@for.paris
- Phone: +33148036454
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.