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Inherited Retinal Degenerative Disease Registry

Study acronym: MRTR
StatusRecruiting
PhaseNot specified
Started
View on ClinicalTrials.gov ↗

Record History

See every version on ClinicalTrials.gov ↗

  1. 3 versions Re-verified since Feb 13, 2023, no change to tracked fieldsv6-v8
  2. Eligibility criteria shortened, about 9 words
    • Study description shortened, about 24 words
    • Site details revised
    v5
  3. Re-verified, no change to tracked fieldsv4
  4. Primary and study completion dates: Jun 2034 to Jun 2037
    • Study description shortened, about 5 words
    v3
  5. Re-verified, no change to tracked fieldsv2
  6. Study First Submitted
  • Stopped: an ongoing trial was terminated, suspended or withdrawn.
  • Notable: the trial’s plan changed such as a big move in its timeline or size, a new primary endpoint, sponsor or phase, or recruiting opened or resumed.
  • Minor: routine progress and housekeeping, such as sites added or enrollment closed.
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.
Trial Details
NCT Number NCT02435940
Lead Sponsor Foundation Fighting Blindness
Conditions
(from sponsor)		 Eye Diseases Hereditary, Retinal Disease, Achromatopsia, Bardet-Biedl Syndrome, Bassen-Kornzweig Syndrome, Batten Disease, Best Disease, Choroidal Dystrophy +20 more
Related terms Abetalipoproteinemia, Achromatopsia 3, Bardet-Biedl Syndrome, Charcot-Marie-Tooth Disease, Choroideremia, Color Vision Defects, Cone Dystrophy, Cone-Rod Dystrophies, Enhanced S-Cone Syndrome, Eye Diseases, Hereditary, Fundus Albipunctatus, Gyrate Atrophy, Kearns-Sayre Syndrome, Leber Congenital Amaurosis, Neuronal Ceroid-Lipofuscinoses, Night blindness, congenital stationary, Refsum Disease, Retinal Diseases, Retinitis Pigmentosa, Retinoschisis, Stargardt Disease, Usher Syndromes, Vitelliform Macular Dystrophy
Enrollment 20,000 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov