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. 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.

Conditions

• 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

Sponsors & Collaborators

• Foundation Fighting Blindness

  lead OTHER

Principal Investigators

• Todd Durham, PhD · Senior Vice President, Clinical and Outcomes Research

Eligibility

Sex

ALL

Healthy Volunteers

Yes

Timeline & Regulatory

Start

2014-06-30

Primary Completion

2037-06-30

Completion

2037-06-30

Countries

• United States

Study Locations