The National Institutes of Health (NIH) plans to establish a real-world data platform to explore the causes of autism, utilizing Medicare and Medicaid information. Collaborating with the Centers for Medicare & Medicaid Services, the database will integrate insurance claims, electronic health records, and data from smart devices. This initiative aims to uncover the root causes of autism and chronic diseases, with a pilot program focusing on Autism Spectrum Disorders. Officials clarified that despite earlier concerns, this effort is not aimed at creating a national autism registry.
"We're using this partnership to uncover the root causes of autism and other chronic diseases," HHS Secretary Robert F. Kennedy Jr. said in a statement.
"Using ASD [Autistic Spectrum Disorders] as the pilot research program, teams at CMS and NIH will establish a secure tech-enabled mechanism to enhance this data sharing with timely, privacy and security compliant data exchange."
NIH's Bhattacharya said that the partnership with CMS was "an important step in our commitment to unlocking the power of real-world data to inform public health decisions and improve lives."
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