The National Institutes of Health (NIH) and the Centers for Medicare & Medicaid Services (CMS) have announced a new partnership aimed at enhancing research capabilities through secure access to select Medicare and Medicaid data. This initiative will initially focus on understanding autism spectrum disorder (ASD).
The collaboration seeks to establish a real-world data platform that integrates claims data, electronic medical records, and consumer wearables. The long-term goal is to link real-world data for chronic condition research while adhering to privacy laws.
HHS Secretary Robert F. Kennedy, Jr. stated, “We’re using this partnership to uncover the root causes of autism and other chronic diseases. We’re pulling back the curtain—with full transparency and accountability—to deliver the honest answers families have waited far too long to hear.”
A pilot program will begin with establishing a data use agreement under CMS’ Research Data Disclosure Program, concentrating on Medicare and Medicaid enrollees diagnosed with ASD. The project aims to create a secure mechanism for timely data exchange that complies with privacy standards.
“This partnership is an important step in our commitment to unlocking the power of real-world data to inform public health decisions and improve lives,” said NIH Director Dr. Jay Bhattacharya. He emphasized that linking CMS claims data with a secure NIH platform would advance research into autism and chronic diseases.
With ASD now affecting 1 in 31 children in the United States, there is an urgent need for multi-source data insights. CMS Administrator Dr. Mehmet Oz remarked, “This joint effort aligns with our shared goal of fostering innovation to improve Americans’ lives while safeguarding patient privacy.”
For more information about NIH and its programs, visit www.nih.gov.
