Press release

Wednesday, May 7, 2025

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

This partnership will initially focus on research into the root causes of autism spectrum disorders (ASD). In the long term, the partnership will connect real-world data, in a manner consistent with applicable privacy laws to protect Americans' sensitive health information, for research into chronic diseases—a key priority of President Trump and Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr.

"We are using this partnership to uncover the root causes of autism and other chronic diseases," said HHS Secretary Robert F. Kennedy, Jr. “We are lifting the veil – with complete transparency and accountability – to provide the honest answers that families have been waiting for far too long.”

CMS and NIH will initiate this partnership by establishing a data use agreement under the CMS Research Data Disclosure Program, which focuses on Medicare and Medicaid enrollees with an ASD diagnosis. Using ASD as a pilot research program, CMS and NIH teams will establish a secure technology mechanism to enhance data sharing through timely exchange that adheres to privacy and security standards. This pilot research program will contribute to the continued development of a flagship NIH platform, which will ultimately be used by researchers to understand healthcare utilization, the etiology and treatment of chronic diseases, and the economic burden of these diseases.

“This partnership is an important step in our commitment to harnessing the power of real-world data to inform public health decisions and improve patients’ lives,” said Dr. Jay Bhattacharya NIH Director. “Linking CMS reimbursement data to a secure NIH real-world data platform that is fully compliant with privacy and security laws will enable critical research into the complex factors that cause autism and chronic disease, and ultimately improve health outcomes for the Americans we serve.”Researchers will focus on:

Trends in autism diagnosis 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 health systems
  • The prevalence of ASD now affects

1 in 31 children in the United States, and more than 25,000 of these individuals have profound or severe autism, the need for information on multi-source, real-world data has never been more urgent. "This joint effort is part of our shared goal of driving innovation to improve the lives of Americans while preserving patient confidentiality,"

said Dr. Mehmet Oz CMS Administrator. “I look forward to working with Dr. Bhattacharya on this critical project.”About the National Institutes of Health (NIH):

The NIH, the nation's medical research agency, comprises 27 institutes and centers and is part of the U.S. Department of Health and Human Services. The NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research. It studies the causes, treatments, and cures for common and rare diseases. For more information about the NIH and its programs, visit www.nih.gov .NIH…Transforming Discovery into Health

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