Eye Diseases HereditaryMRTRNCT02435940
Inherited Retinal Degenerative Disease Registry
An observational study of Eye Diseases Hereditary and Retinal Disease, run by Foundation Fighting Blindness at 1 site in United States.
Trial 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. Read more about this study
- Who is it for?
- Any ageHealthy volunteers can take part
- Conditions the study is for
- Eye Diseases Hereditary, Retinal Disease, Achromatopsia
- How many people
- 20,000 participants
- Where
- 1 siteUnited States
- Study dates
- Jun 2014to Jun 2037
- How long will I take part?
- 20 Years
- Phase
- Observational
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages Any age
- All sexes
- Healthy volunteers accepted
- Child, Adult, Older adult
Study population: Affected individuals, all ages including minors registered by their parent or guardian.
Who may be able to join
- Diagnosed with an inherited retinal degenerative disease OR
Who cannot join
- Glaucoma only
- Diabetic retinopathy only
- Non-retinal disease
- Not heritable retinal disease
Trial locations and contacts
1 site in 1 country. Contact the study team or a site near you to ask about taking part.
United States1 site, 1 recruiting
- Recruiting
Foundation Fighting Blindness
Columbia, Maryland, 21045
Registry Coordinator, 800-683-5555 ext. 1594, Coordinator@MyRetinaTracker.org
Todd Durham, PhD
About this study
Official title: Foundation Fighting Blindness My Retina Tracker 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.
Read the 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.
- Conditions
- Eye Diseases Hereditary, Retinal Disease, Achromatopsia, Bardet-Biedl Syndrome, Bassen-Kornzweig Syndrome, Batten Disease
- Keywords
- inherited retinal degenerative disease, retinitis pigmentosa, Usher, Leber, Bardet-Biedl, Batten, Best, cone dystrophy, cone-rod dystrophy, choroideremia, congenital night blindness, enhanced s-cone, cone monochromacy, Goldmann-Favre, Kearns-Sayre, Refsum, retinoschisis, rod-cone dystrophy, rod dystrophy, rod monochromacy
- Medical subject headings
- Eye Diseases, Hereditary, Retinal Diseases, Color Vision Defects, Bardet-Biedl Syndrome, Abetalipoproteinemia, Neuronal Ceroid-Lipofuscinoses, Vitelliform Macular Dystrophy, Choroideremia
What is being measured
The primary outcome is the main question the study is designed to answer.
Number of Participants with Rare Diagnoses Within the Inherited Retinal Degenerative Disease Category as Defined by Clinical Evaluation
Participant profiles broken out by disease category and genetic diagnosis
Measured: Data collection is ongoing, up to 20 years.
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted6 May 2015 (estimated)
- Study startJun 2014
- Primary completionJun 2037 (estimated)
- Study completionJun 2037 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Eye Diseases HereditaryStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Other
- Time perspective
- Prospective
- Enrolment
- 20,000 participants (estimated)
- Target duration
- 20 Years
Sponsor and investigators
- Lead sponsor
- Foundation Fighting Blindness
- Sponsor type
- University, hospital or other
- Responsible party
- Sponsor
- Investigators
- Todd Durham, PhD, Principal investigator, Senior Vice President, Clinical and Outcomes Research
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT02435940
- Sponsor's protocol ID
- FFB-Registry-01
- Acronym
- MRTR
- Status last verified
- May 2026
- First submitted
- 3 Apr 2015
- Last updated
- 19 May 2026
- Results posted
- No
- Data monitoring committee
- No
- Individual data sharing
- Undecided