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Congenital Aniridia Patient Questionnaire

Recruitingn/aAges any - anyAllAssistance Publique - Hôpitaux de Paris
NCT05390801 on ClinicalTrials.gov ↗
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In plain words

What the trial is, and whether it could suit you

Congenital aniridia is a pan-ocular genetic disease characterized by a partial or complete absence of the iris, hence its name. The prevalence ranges from 1 / 40,000 to 1 / 96,000 births, but it may be underestimated. This condition combines several types of eye damage and could associate systemic manifestations, with a variable phenotype and genotype. This study aims to identify eye and systemic manifestations in congenital aniridia and to determine the patients' knowledge of their own disease through a survey prepared by ophthalmologists from the Ophthalmology Department of Necker-Enfants Malades Hospital, reference center in France for this pathology. The patient fills it out only once.

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📋 Eligibility rules (as published)
Inclusion Criteria: * Any patient ≥ 18 years old with congenital aniridia and able to respond independently to the study survey, * or patients under 18 years old with congenital aniridia, whose parents can answer the study survey, * adult patients or holders of parental authority and minor patients informed and not opposed to participation in the study. Exclusion Criteria: \- Patients with neurological disorders preventing them from answering the survey, except in the case of minor patients, if the parents can answer for the patient.
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What it tests

  • Survey
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Where

1 site
Hôpital Necker-Enfants Malades
Paris, France
🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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