Inherited Retinal Degenerative Disease Registry

RecruitingObservational studyHealthy volunteers welcome

Foundation Fighting Blindness My Retina Tracker Registry

Who can join

All ages · All sexes · Healthy volunteers welcome

Full eligibility criteria

Inclusion Criteria:

* Diagnosed with an inherited retinal degenerative disease OR

Exclusion Criteria:

* Glaucoma only
* Diabetic retinopathy only
* Non-retinal disease
* Not heritable retinal disease

About the study

The My Retina Tracker® Registry is sponsored by the Foundation Fighting Blindness and is for people affected by one of the rare inherited retinal degenerative diseases studied by the Foundation. It is a patient-initiated registry accessible via a secure on-line portal at www.MyRetinaTracker.org. Affected individuals who register are guided to create a profile that captures their perspective on their retinal disease and its progress; family history; genetic testing results; preventive measures; general health and interest in participation in research studies. The participants may also choose to ask their clinician to add clinical measurements and results at each clinical visit. Participants are urged to update the information regularly to create longitudinal records of their disease, from their own perspective, and their clinical progress. The overall goals of the Registry are: to better understand the diversity within the inherited retinal degenerative diseases; to understand the prevalence of the different diseases and gene variants; to assist in the establishment of genotype-phenotype relationships; to help understand the natural history of the diseases; to help accelerate research and development of clinical trials for treatments; and to provide a tool to investigators that can assist with recruitment for research studies and clinical trials.

Sponsor: Foundation Fighting Blindness · Participants: 20,000 · Started: 2014-06

Contact the study team

Registry Coordinator · Phone: 800-683-5555

Official record on ClinicalTrials.gov — NCT02435940

Locations in the U.S.

Maryland

Foundation Fighting Blindness, Columbia

Conditions

From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.