Patient Registry

The My Retina Tracker® Registry (MRTR) from the Foundation Fighting Blindness is a valuable resource for researchers to gain a deeper understanding of LCA and for patients to get on the radar screens of companies and investigators recruiting for clinical trials.

MRTR has more than 40,000 records of patients with inherited retinal diseases, including LCA. The records contain information about a patient’s genetics, visual abilities, and how vision loss has impacted their ability to perform various activities.

A patient’s personal information is always protected in MRTR; companies and researchers who gain access to registry data never have access to personal information. When therapy developers query the registry to recruit potential trial participants, the Foundation informs the patient and/or family that they may be a candidate for a trial. Then it is up to the patient and family to contact the company if they’re interested in exploring trial participation.

Note: Not all LCA or retinal disease trials use MRTR. It is also good to monitor clinicaltrials.gov, hopeinfocus.org, and fightingblindness.org to stay up to date on clinical trials.

People from anywhere in the world with LCA or another IRD can register in MRTR. The registry is accessible to people with low vision and those who use screen readers. People who have recently received genetic testing through the Foundation’s no-cost genetic testing program were automatically registered in MRTR. People can visit www.myretinatracker.org to register on their own and/or access and update their records.

If you have questions about MRTR or the Foundation’s genetic testing program, send an email to coordinator@myretinatracker.org.

Hope in Focus has provided support for MRTR.