The National Institutes of Health (NIH) and the Centers for Medicare & Medicaid Services (CMS) have announced a new partnership to enable autism research using Medicare and Medicaid claims data. The initiative aims to create a secure real-world data platform while maintaining compliance with federal privacy laws.
Project goals and research focus
The pilot project will initially study Medicare and Medicaid enrollees diagnosed with autism spectrum disorder (ASD). Research priorities include:
- Tracking autism diagnosis trends over time
- Evaluating outcomes from medical and behavioral treatments
- Measuring access to care and identifying disparities
- Studying the economic impact on families and healthcare systems
“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.
Privacy and data protection
The NIH-CMS collaboration will implement a secure, privacy-compliant system to manage data sharing. Officials confirmed that all personal health information will be de-identified to prevent individual identification.
CMS Administrator Dr. Mehmet Oz said the project aligns with efforts to promote innovation while safeguarding sensitive information.
Long-term plans beyond autism
While autism research is the first focus, the platform will later expand to study chronic conditions more broadly. The effort is part of a wider $50 million research program led by Health and Human Services (HHS) Secretary Robert F. Kennedy Jr., focusing on chronic disease causes and treatment.
“We’re using this partnership to uncover the root causes of autism and other chronic diseases,” Kennedy said.
Criticism and expert concerns
Some researchers and advocacy groups have raised questions about the project’s focus and messaging. The Autistic Self Advocacy Network emphasized the need for clear de-identification of data to protect individuals’ privacy.
Experts also cautioned that claims data may not capture environmental exposures or reflect the full diversity of the autism community, as it primarily covers individuals enrolled in public insurance programs.
What happens next
NIH and CMS are finalizing technical preparations for secure data exchange. Pilot studies are expected to begin later this year, with preliminary results potentially available by September 2025.
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