Thousands join fight against blindness by sharing their stories

NCT ID NCT02435940

Recruiting now Knowledge-focused Sponsor: Foundation Fighting Blindness Source: ClinicalTrials.gov ↗

First seen Jun 24, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This registry collects information from people with inherited retinal diseases, like retinitis pigmentosa and Stargardt disease. Participants share their symptoms, family history, and genetic test results online. The goal is to help researchers understand these rare diseases and find volunteers for future studies and clinical trials.

What this could mean

Our plain-language read of the trial. This is informational only — not medical advice or a prediction.

What this could lead to: If successful, this registry could help researchers better understand inherited retinal diseases and speed up the development of new treatments.
What could go wrong: This is an observational registry, not a treatment trial. It will not directly improve vision or provide a cure.

This is an AI summary of the original study and may miss details. Read our disclaimer.

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Conditions

The condition(s) this trial relates to.

abetalipoproteinemia achromatopsia Achromatopsia 3 adult Refsum disease Bardet-Biedl syndrome central areolar choroidal dystrophy Charcot-Marie-Tooth disease choroideremia Color Vision Defects cone dystrophy cone-rod dystrophy congenital stationary night blindness enhanced S-cone syndrome Eye Diseases, Hereditary fundus albipunctatus Goldmann-Favre syndrome Kearns-Sayre syndrome Leber congenital amaurosis neuronal ceroid lipofuscinosis 3 Neuronal Ceroid-Lipofuscinoses ornithine aminotransferase deficiency retinal disorder retinitis pigmentosa retinitis punctata albescens retinoschisis Stargardt disease Usher syndrome vitelliform macular dystrophy vitelliform macular dystrophy 2

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

ACHROMATOPSIA BARDET BIEDL SYNDROME BASSEN-KORNZWEIG SYNDROME BATTEN DISEASE BEST DISEASE CHOROIDAL DYSTROPHY CHOROIDEREMIA CONE DYSTROPHY CONE-ROD DYSTROPHY CONGENITAL STATIONARY NIGHT BLINDNESS ENHANCED S-CONE SYNDROME EYE DISEASES, HEREDITARY FUNDUS ALBIPUNCTATUS GOLDMANN-FAVRE SYNDROME GYRATE ATROPHY JUVENILE MACULAR DEGENERATION KEARNS-SAYRE SYNDROME LEBER CONGENITAL AMAUROSIS REFSUM SYNDROME RETINAL DISEASE RETINITIS PIGMENTOSA RETINITIS PUNCTATA ALBESCENS RETINOSCHISIS ROD CONE DYSTROPHY ROD DYSTROPHY ROD MONOCHROMACY STARGARDT DISEASE USHER SYNDROME

Contacts and locations

Locations

Foundation Fighting Blindness
RECRUITING

Columbia, Maryland, 21045, United States

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