My Retina Tracker Program (MRT) is a volunteer registry for those who have been diagnosed with an inherited retinal degeneration (IRD). The program provides testing for 266 retinal disease genes. Usually, one or more gene defects are the cause of most inherited retinal degenerative diseases. The genetic testing will be used to help determine which defective gene(s) is causing the IRD.

One of the goals at The Foundation Fighting Blindness, a non-profit organization, and sponsor of this program is to find treatments for those who are living with visual loss due to IRD. Through the registry program, they hope to gain insight into the prevalence of different inherited retinal diseases, offer support to research projects, allow for collaborative work among researchers and provide a way to connect patients to active clinical trials.

Eligible patients are provided with free genetic testing and genetic counseling through registering at the Foundation Fighting Blindness website. Patients must have a clinical diagnosis of one of the 20 inherited retinal diseases on the list provided by the Foundation Fighting Blindness, such as Retinitis Pigmentosa, Best disease, Usher syndrome, and Stargardt disease. Age-related Macular Degeneration is not included in the list for eligibility. Participants must live in the United States or in a U. S. territory. In addition, a patient cannot have had genetic testing of more than 32 IRD-related genes since 2016.

Genetic counseling is provided before and after genetic testing. Deciding to undergo genetic testing is not a simple one. It is best to discuss not only the genetic testing process and procedure but also the potential ramifications of knowing one’s genetic defects. Not everyone who is tested is always found to have a known defective gene.

Before a patient has the no cost gene testing through the MRT, they must first have a clinical exam by a retinal specialist who sees patients with inherited retinal diseases.

A preliminary diagnosis can be made to help with coordinating gene testing. Next, the patient and/or family members will meet with a genetic counselor who can not only provide counseling on how knowing your genetic defect can impact your life, but will also discuss what genetic testing is best for your situation. Testing is done through a blood sample. After the test results come back, your genetic counselor will help to interpret the test results for you. In addition, your information will be stored in the My Retina Program registry. Those who are involved in IRD research and clinical trials will have access to what is called “de-identified information.” In other words, researchers can see the clinical diagnosis, age, patient gender, and the genes and variants associated with IRD, but not the patient’s identity. To find out more visit:

My Retina Tracker Registry Program by Foundation Fighting Blindness

Leslie Degner, RN, BSN

www.WebRN-MacularDegeneration.com