My Retina Tracker at www.MyRetinaTracker.org is the Foundation’s free, secure, global patient registry for people around the world with IRDs. It is free, secure, and designed to be accessible for people with vision impairments.
Because IRDs are rare, there is limited human data available to researchers. My Retina Tracker provides valuable information and data on IRDs to pre-screened researchers and companies who are developing therapies, recruiting for clinical trials, and performing other disease-related studies.
Registrants to My Retina Tracker can provide medical, genetic, exam, and other data related to their disease. Genetic information about the disease is very helpful, though it isn’t required to register. Patients can also give permission to their doctors to enter certain data (e.g., test results).
The patient’s personal information is never available to or seen by the researchers and companies accessing My Retina Tracker. If you meet a researcher’s criteria for a clinical trial, he or she only gets an alphanumeric identifier for your record. Only the Foundation’s My Retina Tracker administrators can match the identifier to your name. The administrator will let the patient know which researcher or recruiter is potentially interested in the patient for a clinical trial. Then it is up to the patient to contact the researcher or recruiter.
My Retina Tracker funding comes from the Foundation’s donors and generous grants from the George Gund Foundation and Sofia Sees Hope Foundation.