Age-Related Macular Degeneration (ARMD) Clinical Trials

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Foundation Fighting Blindness My Retina Tracker Registry

Status: Recruiting
Location: See location...
Study Type: Observational
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.

Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: t
View:

• Diagnosed with an inherited retinal degenerative disease OR

Locations
United States
Maryland
Foundation Fighting Blindness
RECRUITING
Columbia
Contact Information
Primary
Registry Coordinator
Coordinator@MyRetinaTracker.org
800-683-5555
Time Frame
Start Date: 2014-06
Estimated Completion Date: 2037-06
Participants
Target number of participants: 20000
Authors
Brian Mansfield
Related Therapeutic Areas
Cramp-Fasciculation Syndrome
ADULT Syndrome
Spinal Muscular Atrophy Type 3
Retinitis Pigmentosa
Progressive External Ophthalmoplegia
Usher Syndrome
Cardiomyopathy
Bardet-Biedl Syndrome
Kearns-Sayre Syndrome
Movement Disorders
CLN2 Disease
Familial Deafness
Refsum Disease
Late-Onset Retinal Degeneration
Primary Lateral Sclerosis
Choroideremia
Hearing Loss
Color Blindness
Spinal Muscular Atrophy (SMA)
Infantile Refsum Disease
Lipidosis with Triglycerid Storage Disease
Adult-Onset Vitelliform Macular Dystrophy (AVMD)
Batten Disease
CLN3 Disease
Hereditary Sensory Neuropathy Type 1 (HSN1)
Cone-Rod Dystrophy
Charcot-Marie-Tooth Disease
Brown Syndrome
CLN4 Disease
Familial Hypobetalipoproteinemia
Infant Hearing Loss
Spinal Muscular Atrophy Type 2
Abetalipoproteinemia
Age-Related Macular Degeneration (ARMD)
CLN5 Disease
Hypolipoproteinemia
Blue Cone Monochromatism
Leber Congenital Amaurosis
Gyrate Atrophy of the Choroid and Retina
Retinopathy Pigmentary Mental Retardation
CLN1 Disease
Sponsors
Leads: Foundation Fighting Blindness

This content was sourced from clinicaltrials.gov

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