National Eye Institute Biorepository for Retinal Diseases

This observational study is collecting health information and blood and tissue samples from people with and without eye diseases, especially age-related macular degeneration (AMD) and diabetic retinopathy. Researchers want to understand why some people get eye problems and others don't, or why some respond to treatment while others don't. The goal is to create a database for future research to identify new factors related to how retinal conditions develop, progress, and respond to treatment. You can join if you are between 2 and 120 years old, have a diagnosed or undiagnosed retinal disease, or can serve as a healthy comparison. The study is ongoing and aims to enroll up to 650 participants.

Study design
This is an observational study that plans to enroll up to 650 participants. It is collecting data and samples from people with and without various retinal diseases.
What's involved
Not specified in the trial record.
Compensation
Not stated in the trial record.
Follow-up
The primary endpoint is ongoing, meaning data collection is continuous.

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NCT01496625

National Eye Institute Biorepository for Retinal Diseases

Recruiting
Not specifiedAges 2+Observational
National Eye Institute (NEI)
~650 participants
Updated 2026-08-28 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
The intent is to collect data on a variety of phenotypic parameters and to store biospecimens in a manner that permits a broad array of potential testing and experimentation in the future.
Measured over Ongoing
Age-Related Macular Degeneration
Diabetic Retinopathy
Von Hippel-Lindau Syndrome
Retinal Disease
Retinal Vein Occlusion
1 sites across 1 states
Maryland1
  • Tiarnan DL Keenan, M.D. · PRINCIPAL_INVESTIGATOR · National Eye Institute (NEI)

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Eligibility criteria

Inclusion

Have the ability to understand and sign an informed consent or have a parent/legal guardian to do so if they are minor children.
Manifest diagnosed or undiagnosed retinal disease(s), or could serve as an unaffected control suitable for comparison to participants with various retinal diseases, particularly AMD and diabetic retinopathy (taking into account matching factors such as age and past ocular history).

Exclusion

Are unable or unwilling to give informed consent that includes collection and study of at least one peripheral blood sample.
Are unable or unwilling to give informed consent that includes use of NIH medical records and clinical samples for research.
Have a systemic disease that compromises the ability to provide adequate ophthalmologic examination or treatment.
  • The intent is to collect data on a variety of phenotypic parameters and to store biospecimens in a manner that permits a broad array of potential testing and experimentation in the future.Ongoing

    In subsequent potential studies (dependent on separate IRB approval in each case), the outcome measures of the clinical data and samples from this protocol might include: (i) key parameters of phenotype from ophthalmic evaluation, such as visual acuity and aspects of ocular disease status documented by fundus imaging modalities like color photography, autofluorescence photography, and optical coherence tomography (OCT); (ii) other biomarkers identified from biospecimens.