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Massive DNA bank launched to unlock secrets of rare eye diseases

NCT ID NCT00378742

Knowledge-focused Sponsor: National Eye Institute (NEI) Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed This study
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

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

Summary

This study created a national DNA and blood repository for inherited eye diseases like retinitis pigmentosa. Over 6,600 participants provided blood samples and eye exam data to help researchers identify genetic causes. The stored samples are available to scientists without personal identifiers, aiming to accelerate research into future gene-based treatments.

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 repository could help researchers identify genetic causes of inherited eye diseases and speed up development of future gene-based therapies.
What could go wrong
This is a sample-collection study, not a treatment trial. It does not test any therapy, so direct patient benefits are not expected from participation.

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

6,618 people

The number who actually took part.

Started

Sep 2006

Finished

Nov 2015

Lead sponsor

A government research agency

The lead sponsor is the US National Institutes of Health.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Participants with inherited eye diseases or their unaffected relatives.

Ages

1 day to 100 years

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show 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: To participate in this protocol: 1a. The participant must present with characteristics that meet minimal clinical criteria established by eyeGENE, as determined by the referring clinician. OR 1b. The participant must be a relative of an affected participant if analysis would help with the interpretation of an affected participant's test results or to obtain some useful information as decided by the eyeGENE Research Study Group. 2\. The participant must be willing and able to provide a suitable blood sample. EXCLUSION CRITERIA: * Severe systemic disease that compromise the ability of the referring clinician to obtain an adequate eye examination. * Any disease or condition that makes it unsafe for a subject to provide a blood sample of at least 5 ml for children and at least 15ml for adults. * Inability to cooperate with phlebotomy and clinical examination. * Those with impaired decision-making capability who do not have a legally-authorized representative. * If clinical criteria information, consent forms, or a blood sample can not be provided by the doctor or participant after one year of submitting a blood sample to eyeGENE .

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Conditions

The condition(s) this trial relates to.

macular degeneration retinitis pigmentosa

As listed by the trial registrant

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

Inherited ophthalmic diseases Retinitis pigmentosa

Contacts and locations

Locations

  • National Institutes of Health Clinical Center

    Bethesda, Maryland, 20892, United States

More trials for these conditions

Other studies related to the condition(s) this trial covers.