Recruiting

NCT Number: NCT02435940

Inherited Retinal Degenerative Disease Registry

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.

Recruiting

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Key information

Conditions

Eye Diseases Hereditary Abetalipoproteinemia Abnormalities, Multiple Achromatopsia Achromatopsia 3 Bardet-Biedl Syndrome Bassen-Kornzweig Syndrome Batten Disease Best Disease Blindness Brain Diseases Brain Diseases, Metabolic Brain Diseases, Metabolic, Inborn Cardiomyopathies Cardiovascular Diseases Central Nervous System Diseases Charcot-Marie-Tooth Disease Choroid Diseases Choroidal Dystrophy Choroideremia Chronic Disease Ciliopathies Color Vision Defects Cone Dystrophy Cone-Rod Dystrophies Cone-Rod Dystrophy Congenital Abnormalities Congenital Stationary Night Blindness Congenital, Hereditary, and Neonatal Diseases and Abnormalities Cranial Nerve Diseases Deaf-Blind Disorders Deafness Disease Attributes Dyslipidemias Ear Diseases Enhanced S-Cone Syndrome Eye Diseases Eye Diseases, Hereditary Fundus Albipunctatus Genetic Diseases, Inborn Genetic Diseases, X-Linked Goldmann-Favre Syndrome Gyrate Atrophy Hearing Disorders Hearing Loss Hearing Loss, Sensorineural Heart Diseases Hereditary Sensory and Motor Neuropathy Heredodegenerative Disorders, Nervous System Hypobetalipoproteinemias Hypolipoproteinemias Hypothalamic Diseases Juvenile Macular Degeneration Kearns-Sayre Syndrome Leber Congenital Amaurosis Lipid Metabolism Disorders Lipid Metabolism, Inborn Errors Lipidoses Macular Degeneration Metabolic Diseases Metabolism, Inborn Errors Mitochondrial Diseases Mitochondrial Myopathies Muscular Diseases Musculoskeletal Diseases Nervous System Diseases Nervous System Malformations Neurodegenerative Diseases Neurologic Manifestations Neuromuscular Diseases Neuronal Ceroid-Lipofuscinoses Night blindness, congenital stationary Nutritional and Metabolic Diseases Ocular Motility Disorders Ophthalmoplegia Ophthalmoplegia, Chronic Progressive External Otorhinolaryngologic Diseases Paralysis Pathologic Processes Pathological Conditions, Signs and Symptoms Peripheral Nervous System Diseases Peroxisomal Disorders Polyneuropathies Refsum Disease Refsum Syndrome Retinal Degeneration Retinal Disease Retinal Diseases Retinal Dystrophies Retinitis Pigmentosa Retinitis Punctata Albescens Retinoschisis Rod Dystrophy Rod Monochromacy Rod-Cone Dystrophy Sensation Disorders Signs and Symptoms Stargardt Disease Usher Syndrome Usher Syndromes Uveal Diseases Vision Disorders Vitelliform Macular Dystrophy

Sex eligibility

All sexes

Study type

Observational

Primary location

Foundation Fighting Blindness

Columbia, Maryland, 21045, United States

Location status: Recruiting

Location contact

Registry Coordinator

CONTACT

[email protected]

800-683-5555 ext. 1594

Todd Durham, PhD

PRINCIPAL_INVESTIGATOR

About this study

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 [email protected]. 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.

Who can participate

Healthy volunteers accepted: Yes

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

Diagnosed with an inherited retinal degenerative disease OR

Exclusion criteria

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

Treatment and study plan

Primary outcomes

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 by disease category and genetic diagnosis

Study contacts

Contact information is provided by the study sponsor or research team.

Registry Coordinator

CONTACT

[email protected]

800-683-5555 ext. 1594

Sponsors and collaborators

Lead sponsor

Foundation Fighting Blindness

Other

Registry information

Official study title

Foundation Fighting Blindness My Retina Tracker Registry

Acronym: MRTR

Important dates

Study start: 2014
Primary completion: 2037
Study completion: 2037
First posted: May 6, 2015
Registry last updated: May 19, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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Active, Not Recruiting