News Release

Wednesday, May 7, 2025

NIH, CMS Partner to Advance Understanding of Autism Through Secure Access to Select Medicare and Medicaid Data

The National Institutes of Health (NIH) and the Centers for Medicare & Medicaid Services (CMS) today announced a landmark partnership to enable NIH to build a real-world data platform enabling advanced research across claims data, electronic medical records, and consumer wearables.

This partnership will focus first on enabling research around the root causes of autism spectrum disorder (ASD). In the long term, the partnership will link real-world data, in a manner consistent with applicable privacy laws to protect Americans’ sensitive health information, for research on chronic conditions—a core priority of President Trump and the Department of Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr.

“We’re using this partnership to uncover the root causes of autism and other chronic diseases,” said HHS Secretary Robert F. Kennedy, Jr. “We’re pulling back the curtain—with full transparency and accountability—to deliver the honest answers families have waited far too long to hear.”

CMS and NIH will start this partnership by establishing a data use agreement under CMS’ Research Data Disclosure Program focused on Medicare and Medicaid enrollees with a diagnosis of ASD. Using ASD 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. This pilot research program will inform continued development of a landmark NIH platform to ultimately be used by researchers in understanding healthcare utilization, chronic disease etiology and treatment, and the economic burden of chronic conditions.

“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. “Linking CMS claims data with a secure real-world NIH data platform, fully compliant with privacy and security laws, will unlock landmark research into the complex factors that drive autism and chronic disease – ultimately delivering superior health outcomes to the Americans we serve.”

Researchers will focus on:

  • Autism diagnosis trends over time
  • Health outcomes from specific medical and behavioral interventions
  • Access to care and disparities by demographics and geography
  • The economic burden on families and healthcare systems

With ASD prevalence now affecting 1 in 31 children in the United States, and with more than 25% of those individuals experiencing profound or severe autism, the need for multi-source, real-world data insights have never been more urgent.

“This joint effort aligns with our shared goal of fostering innovation to improve Americans’ lives while safeguarding patient privacy,” said CMS Administrator Dr. Mehmet Oz. “I look forward to working with Dr. Bhattacharya on this critical project.”

About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

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