Neurology group, Verana Health join to accelerate research

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The American Academy of Neurology is working with Verana Health to accelerate research in neurology using real-world evidence generated with information from the Axon Registry.

The partners are developing the registry, which is a growing neurology dataset that contains clinical data from 1.5 million patients and 5 million patient visits.

The American Academy of Neurology (AAN) is a professional medical association with 36,000 members, while Verana is a vendor that contends it has the largest clinical databases in medicine.

The collaboration will facilitate development and delivery of de-identified clinical data for participants in the broader neurologic community to improve treatments and discover cures for those affected by neurologic disease.

“We are entering an era where data-driven medicine is improving the quality of care we’re providing and giving us clues about which therapies work best, and how we may be able to better predict and prevent disease,” says Ralph Sacco, MD, AAN’s president.

“It was very important to me, as chair of the neurology department at the University of Miami’s Miller School of Medicine, to be an early adopter in my department and get firsthand knowledge of the power of the Axon Registry,” Sacco adds. “This registry saves time and energy for Academy members who also are participating in MIPS or American Board of Psychiatry and Neurology recertification.”

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As part of the data validation process, data elements were extracted from electronic health records by an external auditor using virtual site visits at participating sites. The data included 720 patients, with diversity among EHR vendors, practice settings, sizes and locations.

The conclusion of early testing revealed a range of concordance between data elements and quality measures in the Axon Registry, and those elements independently abstracted and calculated by an independent vendor.

“Validation of data and processes is important for the Axon Registry as a clinical data quality registry that utilizes automated data extraction methods from the EHR,” according to researchers. “Implementation of remediation strategies to improve data accuracy will support the ability of the Axon Registry to perform accurate quality reporting.”

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