My Retina Tracker Registry
What is the My Retina Tracker registry?
My Retina Tracker is a registry 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 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 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. Using the internet, go to www.MyRetinaTracker.org and click the button marked “Click here to register now!”
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.
My Retina Tracker Genetic Testing Study
What is the My Retina Tracker Genetic Testing Study?
The Genetic Testing Study is one of the current membership benefits of My Retina Tracker. The genetic basis of disease is important for understanding the inherited retinal dystrophies and for developing treatments and cures for the diseases. To enhance the value of the registry, members are currently being offered the chance to participate in a research study to identify the genetic basis of their disease.
As a research study, there is a specific protocol an ordering clinician must follow and a limited number of enrolling physicians.
Who is eligible for the My Retina Tracker Genetic Testing Study?
Any member of the My Retina Tracker registry, who is also a resident of the United States, may apply for the Genetic Testing Study if they have been clinically diagnosed with one of the orphan inherited retinal degenerative diseases studied by the Foundation and have not received a clear genetic test result. For more information about the Genetic Testing Study, read the complete Frequently Asked Questions document available on www.MyRetinaTracker.org – FAQs and Documents.
Cost of Participating
What does the test cost?
For members of My Retina Tracker, there is no out of pocket cost for the genetic test or the associated genetic counseling. The costs of the test and counseling, which are well over $1,200 carry no cost to the participant.
However, participants will need to cover any cost of a clinical consultation and related exams that an enrolling physician may decide are necessary before they can order the test.
How long will the Genetic Testing Study be offered?
The Genetic Testing Study is a current membership benefit for those who have a profile in My Retina Tracker and are residents of the United States, but is an expensive study that is dependent on the generous support of donors. While we anticipate our current funding will support testing through 2019 this is subject to change according to costs and funding.
If you would like to support the My Retina Tracker Genetic Testing Study, please click on one of the donation buttons below. Please note that contributions have no effect on the eligibility nor approval of any one person. Contributions cannot be directed to support an individual or family in the genetic testing study.
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.