di , 02/11/2023

First of its Kind Collaboration Marries Genomics Data with World’s Largest Database of Ophthalmologic Patient Encounters to Improve Accuracy of Clinical Research

SAN FRANCISCO & COLUMBIA, Md.–(BUSINESS WIRE)–Verana Health® (Verana), a digital health company helping to revolutionize patient care and clinical research by unlocking the potential of real-world data, and the Foundation Fighting Blindness – the world’s leading organization committed to finding treatments and cures for blinding retinal diseases—announce a partnership focused on providing the life sciences community with deeper and broader data to optimize and expedite clinical trials. Under the partnership, the Foundation will provide Verana with de-identified genomics data from its My Retina Tracker® Registry to support clinical research surrounding patients with inherited retinal degenerative diseases.

This groundbreaking partnership leverages the Foundation’s de-identified genomics and patient-reported data on tens of thousands of individuals with inherited retinal degenerative diseases to support commercial real-world evidence (RWE) clinical research initiatives. As part of its mission to drive the research that will provide preventions, treatments and cures for people affected by retinal degenerative diseases, the Foundation Fighting Blindness provides no-cost genetic testing to people with inherited retinal diseases. This comprehensive panel screens for 351 different genetic mutations known to be associated with retinal disease. That data is captured in the My Retina Tracker Registry and will be linked, using privacy-preserving tokens, with Verana’s VeraQ® population health data engine, which contains real-world electronic health record data from the American Academy of Ophthalmology (Academy) IRIS® Registry (Intelligent Research in Sight). With this combined dataset, Verana and the Foundation are making it possible for life sciences companies to accelerate and advance the accuracy of their clinical research, patient recruitment and clinician engagement efforts.

“Genomics data is one of the critical new elements taking us to the next frontier in RWE. With this partnership, we’re now making it possible to not only identify the critical encounters and optimal opportunities for intervention in the ophthalmic patient journey, but can now link those events to specific biomarkers that may hold clues to improved and more targeted therapies,” said Lawrence Whittle, President, Verana Health. “The Foundation Fighting Blindness has been on the forefront of patient advocacy and innovation with the development of its genetic testing program and My Retina Tracker Registry; we are honored to work with them and look forward to helping unlock the enormous potential to transform ophthalmic treatment.”

“With roughly 5 million people worldwide expected to be affected by inherited retinal diseases, the ability to understand the unique genetic profiles behind each of those cases holds the potential to transform the way we diagnose and treat these conditions,” said Todd Durham, Sr. Vice President, Clinical and Outcomes Research, Foundation Fighting Blindness. “Verana has set itself apart as a leader in using RWE to improve ophthalmic care and we are optimistic about the opportunity for this partnership to help life sciences teams find faster paths to treatments.”

As the exclusive data curation and analytics partner of the Academy’s IRIS Registry—the largest specialty society clinical data registries in all of medicine, containing de-identified longitudinal patient data collected from more than 16,000 contributing clinicians—Verana Health is the leading source of RWE in the field of ophthalmology. Through its partnership with the Foundation Fighting Blindness, Verana will be able to incorporate the Foundation’s detailed genomics and patient-reported data, along with IRIS Registry data, into its client-facing clinical research initiatives. Specific research applications for the combined dataset include patient and site selection for clinical trials, health economics and outcomes (HEOR) research, medical affairs support and more.

About Verana Health

Verana Health® (Verana) is revolutionizing patient care and clinical research by unlocking the potential of real-world data. Verana has an exclusive real-world data network of 90 million de-identified patients from more than 20,000 clinicians, stemming from its exclusive data partnerships with the American Academy of Ophthalmology®, American Academy of Neurology, and American Urological Association. Verana harnesses deep expertise, secure advanced technology, and direct access to exclusive, near real-time data sources to deliver actionable quality insights that help companies make sense of the data.

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 $891 million toward its mission of accelerating research for preventing, treating, and curing blindness caused by the spectrum of blinding retinal diseases including: retinitis pigmentosa, macular degeneration, and Usher syndrome.


Verana Health Media Contact:
Rachel Ford Hutman

Ford Hutman Media



Foundation Fighting Blindness Media Contact
Chris Adams

Vice President, Marketing & Communications