Thousands join fight against blindness by sharing their stories
NCT ID NCT02435940
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.
Study facts
What this study's own registry entry says, in plain language.
- Participants
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About 20,000 people
The number the study aims to enrol. It can still change while the study runs.
- Start date
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Jun 2014
- Expected to finish
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Jun 2037
An estimate. End dates often move.
- Lead sponsor
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Other sponsor
The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.
Who can take part
This study's own entry requirements. Only the study team can say for certain whether you qualify.
Who is studied
Affected individuals, all ages including minors registered by their parent or guardian.
- Ages
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Children (under 18), adults (18 to 64) and older adults (65 and over)
- Sex
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Anyone
- Healthy volunteers
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Accepted
You do not need to have the condition being studied to take part.
Show the full entry requirements Hide the full entry requirements
Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.
Inclusion Criteria: * Diagnosed with an inherited retinal degenerative disease OR Exclusion Criteria: * Glaucoma only * Diabetic retinopathy only * Non-retinal disease * Not heritable retinal disease
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
How to take part
Only the study team decides who joins. These are the ways to reach them.
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The places running it
1 site. The list below names each one and where it is.
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The official record
ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.
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A doctor treating you
A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.
Contacts and locations
Locations
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Foundation Fighting Blindness
RECRUITINGColumbia, Maryland, 21045, United States
More trials for these conditions
Other studies related to the condition(s) this trial covers.
- A gene therapy injected into the eye aims to restore vision lost to a rare inherited retinal disease
- Can a single gene injection preserve sight in inherited blindness?
- Can a contact lens improve clarity during retinal surgery?
- Can an eye injection slow a genetic cause of blindness?
- Can a single injection restore sight in a rare childhood blindness?
- Can a single eye injection restore sight in genetic blindness?