Actively Recruiting
Functional Impairment in Albinism
Led by Fondation Ophtalmologique Adolphe de Rothschild · Updated on 2025-02-13
50
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
Albinism is a genetic condition characterized by low melanin production, leading to features such as fair skin, white hair, and eye issues including reduced visual acuity, photophobia, and nystagmus. This research focuses on understanding the complaints of people with albinism, especially about glare, and explores interest in treatments that target glare without necessarily improving vision. Participants will complete an online self-questionnaire consisting of 18 questions. The questionnaire link will be emailed to those who agree to participate. This observational study aims to gather patient perspectives on emerging treatments addressing specific symptoms like glare. During the study, patients' responses to the questionnaire will be collected and analyzed to determine their interest in potential treatments for glare. The primary outcome is whether patients with albinism would be interested in a treatment that improves glare without affecting visual acuity. Participation involves completing the questionnaire once, with no additional interventions or follow-up visits planned.
CONDITIONS
Brief Title
Functional Impairment in Albinism
Who Can Participate
Eligibility Criteria
You may qualify if you...
- All patients with albinism
- Patients over 18 years of age
- No opposition to study participation
You will not qualify if you...
- No diagnosis according to Kruijt et al. criteria
- Inability to complete the questionnaire due to visual or technological reasons
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (remote)
Duration - 1 day
Participants complete an online self-questionnaire about their experience with albinism.
1 remote session
Trial Site Locations
Total: 1 location
1
Hôpital Fondation A. de Rothschild
Paris, France, 75019
Actively Recruiting
Research Team
A
Amélie Yavchitz
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
Frequently Asked Questions
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