Congenital Aniridia Patient Questionnaire

Recruiting now

Conditions studied: Congenital Aniridia

In brief

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.

Key facts

Study ID

NCT05390801

Run by

Assistance Publique - Hôpitaux de Paris

People needed

100

Starts

2023-06-08

Expected to finish

2027-12-08

Last updated by the study team

2026-06-02

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• 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.

You may not qualify if…

• 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.

Where it is running

• Hôpital Necker-Enfants Malades — Paris, France (enrolling)

Full record on ClinicalTrials.gov

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