RARE Daily

Verana and Foundation Fighting Blindness Partner to Integrate Genetic Data into Real-World Evidence Research

November 2, 2023

Rare Daily Staff

Digital health company Verana Health and the Foundation Fighting Blindness are partnering to provide 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.

The 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 IRIS Registry. With this combined dataset, Verana and the Foundation will make 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.

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.

Photo: Lawrence Whittle, president, Verana Health

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