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Inherited Retinal Degenerative Disease Registry (MRTR)

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ClinicalTrials.gov Identifier: NCT02435940
Recruitment Status : Recruiting
First Posted : May 6, 2015
Last Update Posted : February 15, 2023
Information provided by (Responsible Party):
Foundation Fighting Blindness

Brief 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.

Condition or disease
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

Detailed Description:

My Retina Tracker Registry provides two portals for data entry and review. Initial registration in the My Retina Tracker Registry is initiated by a participant, not a clinician. Using the participant portal, the participant establishes a username and password, is guided through on-line informed consent, and can then use an interactive guide to record their ophthalmic and family history, genotype and other subjective diagnosis-related and general health information. Drop-down menus and standardized vocabulary are used for database consistency. They may also attach documents, such as medical records, to maintain their personal medical files on their disease. Participants are encouraged to update their profiles regularly to create a longitudinal history of their disease. Participants can see aggregated data for all other participants in the registry and compare their own disease and status to others.

After a profile has been established, Registry members may ask their clinician or genetic counselor to add specific ophthalmic exam and measurement results to the profile. This is done through the clinical portal which also uses a series of drop-down menus to expedite entry and standardize data. Clinicians cannot see the participant data when adding the clinical exam data. Participants are encouraged to collect this data at each medical exam, to create a longitudinal clinical data set.

Access to de-identified data or study recruitment assistance is available to qualified investigators who may inquire by contacting Coordinator@MyRetinaTracker.org. A process that maintains patient anonymity and privacy protection, exists for researchers with Institutional Review Board-approved projects who wish to contact registry participants of interest.

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Study Type : Observational [Patient Registry]
Estimated Enrollment : 20000 participants
Observational Model: Other
Time Perspective: Prospective
Target Follow-Up Duration: 20 Years
Official Title: Foundation Fighting Blindness My Retina Tracker Registry
Study Start Date : June 2014
Estimated Primary Completion Date : June 2037
Estimated Study Completion Date : June 2037

Resource links provided by the National Library of Medicine

Genetic and Rare Diseases Information Center resources: Charcot-Marie-Tooth Disease Hereditary Neuropathy With Liability to Pressure Palsies Roussy Levy Syndrome Retinitis Pigmentosa Cone Dystrophy Cone-rod Dystrophy Neuronal Ceroid Lipofuscinosis Stargardt Disease Kearns-Sayre Syndrome Bardet-Biedl Syndrome Bardet-Biedl Syndrome 1 Bardet-Biedl Syndrome 10 Bardet-Biedl Syndrome 11 Bardet-Biedl Syndrome 12 Bardet-Biedl Syndrome 2 Laurence-Moon Syndrome Usher Syndrome Cone-rod Dystrophy 2 Keratomalacia Gyrate Atrophy of Choroid and Retina Choroideremia Best Vitelliform Macular Dystrophy Abetalipoproteinemia Leber Congenital Amaurosis Refsum Disease Goldmann-Favre Syndrome Adult Neuronal Ceroid Lipofuscinosis Uveal Diseases Chronic Graft Versus Host Disease Familial Hypobetalipoproteinemia Hypolipoproteinemia Peroxisomal Biogenesis Disorders

Primary Outcome Measures :
  1. 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. ]
    Participant profiles broken out be disease category and genetic diagnosis

Information from the National Library of Medicine

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.

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Ages Eligible for Study:   Child, Adult, Older Adult
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   Yes
Sampling Method:   Probability Sample
Study Population
Affected individuals, all ages including minors registered by their parent or guardian.

Inclusion Criteria:

  • Diagnosed with an inherited retinal degenerative disease OR

Exclusion Criteria:

  • Glaucoma only
  • Diabetic retinopathy only
  • Non-retinal disease
  • Not heritable retinal disease

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT02435940

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Contact: Registry Coordinator 800-683-5555 ext 1594 Coordinator@MyRetinaTracker.org

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United States, Maryland
Foundation Fighting Blindness Recruiting
Columbia, Maryland, United States, 21045
Contact: Registry Coordinator    800-683-5555 ext 1594    Coordinator@MyRetinaTracker.org   
Principal Investigator: Todd Durham, PhD         
Sponsors and Collaborators
Foundation Fighting Blindness
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Principal Investigator: Todd Durham, PhD Vice President, Clinical and Outcomes Research
Additional Information:
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Responsible Party: Foundation Fighting Blindness
ClinicalTrials.gov Identifier: NCT02435940    
Other Study ID Numbers: FFB-Registry-01
First Posted: May 6, 2015    Key Record Dates
Last Update Posted: February 15, 2023
Last Verified: February 2023
Keywords provided by Foundation Fighting Blindness:
inherited retinal degenerative disease
retinitis pigmentosa
cone dystrophy
cone-rod dystrophy
congenital night blindness
enhanced s-cone
cone monochromacy
rod-cone dystrophy
rod dystrophy
rod monochromacy
Sorsby pseudoinflammatory dystrophy
juvenile inherited macular degeneration
cone dichromacy
cone trichromacy
albipunctate dystrophy
Additional relevant MeSH terms:
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Kearns-Sayre Syndrome
Usher Syndromes
Neuronal Ceroid-Lipofuscinoses
Color Vision Defects
Bardet-Biedl Syndrome
Laurence-Moon Syndrome
Refsum Disease
Macular Degeneration
Eye Diseases
Retinitis Pigmentosa
Retinal Diseases
Stargardt Disease
Leber Congenital Amaurosis
Cone Dystrophy
Cone-Rod Dystrophies
Gyrate Atrophy
Night Blindness
Eye Diseases, Hereditary
Vitamin A Deficiency
Pathologic Processes
Retinal Degeneration
Retinal Dystrophies
Genetic Diseases, Inborn