My Retina Tracker (MRT) Registry

What is the My Retina Tracker registry?

My Retina Tracker is a registry of people and families affected by inherited retinal degenerative diseases. There are over 20 of these diseases, which includes retinitis pigmentosa, Leber congenital amaurosis, Stargardt disease, Usher syndrome, Best disease, choroideremia, and achromatopsia, amongst other diseases.

The registry is designed to share de-identified information 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 USbased 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 generous grants from the George Gund Foundation and Sofia Sees Hope Foundation.

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 paperbased enrolment 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.