Press Releases

May 15, 2020

Foundation Fighting Blindness Launches Upgraded My Retina Tracker® Registry for People with Inherited Retinal Diseases (IRDs)

Enhancements include streamlined data entry, improved site navigation, better accessibility for low-vision users, and efficient integration with mobile technology.

Media Contact:
Chris Adams
Vice President, Marketing & Communications
cadams@fightingblindness.org
410-423-0585

COLUMBIA, Maryland – May 15, 2020 – The Foundation Fighting Blindness, the world’s leading organization searching for treatments and cures for inherited retinal diseases, has introduced many improvements and upgrades to its My Retina Tracker® Registry. Overall, the upgraded platform makes this best-in-class patient database even easier to use for patients, industry, and investigators who access de-identified data for research studies and clinical trial recruitment. Launched in 2013, more than 15,500 IRD patients are active in the Registry. The patient-driven registry is accessible at MyRetinaTracker.org.

“The My Retina Tracker Registry has been an invaluable resource for both IRD patients and research communities. It provides a secure venue for patients to get on the radar screens of therapy developers — both industry and researcher partners — who are recruiting for clinical trials and conducting studies using human data,” says Brian Mansfield, PhD, executive vice president of research and interim chief scientific officer.

“From the start, we have been strongly committed to security of privacy coupled with ease-of-use for both patients and professionals. These enhancements are part of our continual process to maximize the registry’s usability and efficiently integrate it with our genetic testing programs.”

Highlights of upgrades and enhancements:

  • Improved site interface and navigation which makes for a better user experience
  • Simplified data entry (profiles and surveys) for both patients and clinicians
  • Option to activate accessibility mode (helpful to low-vision users)
  • Enhanced security — fully General Data Protection Regulation (GDPR) compliant (stringent privacy and security regulation)
  • Simplicity across various technologies

The Foundation also offers no-cost genetic testing for those affected with IRDs. The Open Access Genetic Testing Program, allows for any eye care professional in the U.S. to order the no-cost test along with a no-cost genetic counseling session for their IRD patients. Neither membership to My Retina Tracker Registry, nor clinician pre-approval, is needed to participate in the Open Access Genetic Testing Program and receive free testing and genetic counseling.  

If a person who is tested chooses to join My Retina Tracker Registry, their data is automatically uploaded into their profile from the genetic testing laboratory. 

Current sponsors of the new My Retina Tracker Registry include: The George Gund Foundation, Eloxx Pharmaceuticals, Sofia Sees Hope, AGTC and MeiraGTx. Sponsors of the Open Access Genetic Testing Program include: ProQR, Blueprint Genetics, InformedDNA, Sophia Sees Hope, and The George Gund Foundation.

About the Foundation Fighting Blindness

Established in 1971, the Foundation Fighting Blindness is the world’s leading private funding source for retinal degenerative disease research. The Foundation has raised more than $760 million toward its mission of accelerating research for preventing, treating, and curing blindness caused by the entire spectrum of retinal degenerative diseases including: retinitis pigmentosa, age-related macular degeneration, Usher syndrome, and Stargardt disease. Visit FightingBlindness.org for more information.