Verana Health partners Foundation Fighting Blindness to integrate genomics data into real-world evidence research

7 Nov 2023

Written by Linda Essex

Health data Health economics News Outcomes research Patient engagement Real-world evidence Stakeholder engagement

In a new partnership, Verana Health and the Foundation Fighting Blindness will integrate genetic testing results into ophthalmology real-world data to enhance real-world evidence clinical research initiatives.

Real-world data (RWD) digital health company Verana Health and the Foundation Fighting Blindness have announced they are partnering in an initiative to combine genomics data with ophthalmology RWD to enhance sight and blindness real-world evidence (RWE) clinical research. The collaboration will see the Foundation Fighting Blindness provide Verana Health de-identified genetic testing results from its My Retina Tracker Registry to integrate into Verana’s VeraQ population health data engine containing electronic health record (EHR) RWD from the American Academy of Ophthalmology IRIS^® Registry (Intelligent Research in Sight), and the potential of the combined dataset made available to life sciences companies for research.

The Foundation Fighting Blindness was founded in 1971 and since then has raised more than $891 million private funding for retinal degenerative disease research. The foundation’s mission is acceleration of research for preventing, treating, and curing blindness caused by the spectrum of blinding retinal diseases including retinitis pigmentosa, macular degeneration, and Usher syndrome.

As part of its mission to drive retinal degenerative disease research the Foundation Fighting Blindness provides people with inherited retinal diseases no-cost genetic screening for 351 genetic mutations known to be associated with retinal disease. This genomics data from tens of thousands of individuals is captured along with patient-reported data in the foundation’s My Retina Tracker Registry.

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 RWE clinical research initiatives surrounding patients with inherited retinal degenerative diseases. Leveraging the combined dataset resulting from this collaboration will enable life sciences companies to accelerate and advance the accuracy of their clinical research, patient recruitment and clinician engagement efforts. Specific research applications for the combined dataset include patient and site selection for clinical trials, HEOR, and medical affairs support.

“Genomics data is one of the critical new elements taking us to the next frontier in RWE,” said Verana Health President Lawrence Whittle. “With this partnership, we are 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. 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, Senior 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.”