Inherited Retinal Degenerative Disease Registry

Summary

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.

Shortened from the sponsor's brief summary. View official record on ClinicalTrials.gov

Conditions studied

• Eye Diseases Hereditary
• Retinal Disease
• 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
• Fundus Albipunctatus
• Goldmann-Favre Syndrome
• Gyrate Atrophy
• Juvenile Macular Degeneration
• Kearns-Sayre Syndrome
• Leber Congenital Amaurosis
• Refsum Syndrome
• Retinitis Pigmentosa
• Retinitis Punctata Albescens
• Retinoschisis
• Rod-Cone Dystrophy
• Rod Dystrophy
• Rod Monochromacy
• Stargardt Disease
• Usher Syndrome

Eligibility basics and study details

Study type

Observational

Phase

Not applicable

Ages

Any age

Sex

All

Healthy volunteers

Accepted

Sponsor

Foundation Fighting Blindness

Last updated on ClinicalTrials.gov

May 19, 2026

These are the basic criteria only. The full inclusion and exclusion criteria are on the official record, and the study team decides who can take part.

US recruiting sites