Inherited Retinal Degenerative Disease Registry

Part of paid clinical trials in Columbia, Maryland.

Sponsor
Foundation Fighting Blindness
Study ID
NCT02435940
Status
Recruiting
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Conditions

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

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Accepted

Study Details

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.

Key Dates

Start date
Jun 30, 2014
Status verified
May 2026
Primary completion
Jun 30, 2037
Completion
Jun 30, 2037

Study Design

Enrollment
20,000 participants (estimated)

Primary Outcome Measure

Number of Participants with Rare Diagnoses Within the Inherited Retinal Degenerative Disease Category as Defined by Clinical Evaluation [ Time Frame: Data collection is ongoing, up to 20 years. ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
Foundation Fighting BlindnessColumbiaMaryland21045
Registry Coordinator
[email protected]
800-683-5555
Todd Durham, PhD (PRINCIPAL_INVESTIGATOR)

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By research site
Foundation Fighting Blindness· Columbia, MD

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