CRB1 Patient Registry

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The Curing Retinal Blindness Foundation is proud to partner with the Foundation Fighting Blindness to enroll all CRB1 patients in a patient registry.


My Retina Tracker™

My Retina Tracker is a free on-line registry provided by the Foundation Fighting Blindness as part of its mission to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa, macular degeneration, Usher syndrome and the entire spectrum of inherited retinal degenerative diseases.

My Retina Tracker is designed with state-of-the-art database technology to protect your privacy. Data in the Registry is only accessible to the participants, the Foundation Registry staff and appropriately qualified researchers who have applied to the Foundation, through a rigorous scientific review process, for access to the data for research or to help accelerate clinical trial enrollments.

To enroll in the registry, please go to https://www.myretinatracker.org/

What is the purpose of the Registry?

There are five main purposes of the Registry.

  • Provide a place where you can collect and store information about your inherited retinal degenerative disease that will help you keep track of this information over time and share it with your doctor and other healthcare providers if you wish.
  • Provide a place where you can ask your doctor to record important information about your inherited retinal disease such as the results of specific tests, including any genetic diagnosis.
  • Enable the Foundation Fighting Blindness Registry to provide you with the most up to date information about research of interest to people with your inherited retinal degenerative disease, including clinical trials to evaluate new treatments.
  • Enable the collection and sharing of information about inherited retinal degenerative diseases from a large number of patients, with the research and medical community, so that scientists and doctors can better understand these diseases and how to treat them.
  • Connect scientists studying inherited retinal degenerative diseases with people in The Registry who may qualify for their research studies or clinical trials.

To enroll in the registry, please go to https://www.myretinatracker.org/

Please contact Kristin Smedley, President, CRBF with any questions at curingretinalblindness@gmail.com