My Retina Tracker Registry
What is the My Retina Tracker® Registry?
The My Retina Tracker Registry is a research database of people and families affected by rare inherited retinal degenerative diseases (IRD). There are over 20 retinal degenerative diseases which the Foundation Fighting Blindness studies. The list, includes retinitis pigmentosa, Leber congenital amaurosis, Stargardt disease, Usher syndrome, Best disease, choroideremia, and achromatopsia, amongst others.
The registry is designed to share de-identified information within the IRD research and clinical communities about people with an inherited retinal disease to help accelerate the discovery of treatments and cures. Using the data in My Retina Tracker Registry helps us understand how common each type of retinal disease is, how it impacts people’s lives, how the disease progresses, the genes that cause the disease, and helps researchers and companies to efficiently find people who might be interested in participating in research studies and clinical trials.
Who is behind the My Retina Tracker Registry?
My Retina Tracker Registry is provided by the Foundation Fighting Blindness a US-based non-profit organization with the mission to help find treatments and cures for the inherited retinal diseases.
How is the My Retina Tracker Registry funded?
Funding support comes from the Foundation’s membership and multiple awards from other non-profit organizations and companies who seek to support the Foundation’s mission.
How can I join the My Retina Tracker Registry?
Membership is free. Click the button marked “Register” at the top of this page.
If you have a problem using your computer you can ask to have a paper-based enrollment package sent to you, or schedule a call to have a person walk you through the registration process over the phone. To learn more about these options contact Coordinator@MyRetinaTracker.org.
Data Dictionaries
My Retina Tracker, My Story
Susan, who has retinitis pigmentosa, went through many tests in search of learning more about her eye disease. Once she enrolled in the My Retina Tracker® (MRT) testing program, Susan was provided with comprehensive results and a clear diagnosis, giving her clarity and hope.
My Retina Tracker Registry Partners
- Foundation Fighting Blindness
- The Anschutz Foundation
- The Chatlos Foundation
- The George Gund Foundation
- The Hagedorn Fund
- Hope In Focus
- Mary Gourlay Charitable Trust
- Nixon Visions Foundation
- Rhode Island Foundation
- Rudolph Williams Charitable Trust
- Alnylam Pharmaceuticals
- Coave Therapeutics
- Janssen Pharmaceutical Companies of Johnson & Johnson
- Restore Vision
- Rhythm Pharmaceutics
- SparingVision
- Spark Therapeutics
