HHS Launches Autism Research Database Using Medicare and Medicaid Data
The U.S. Department of Health and Human Services (HHS) announced plans to build a new autism research database. The system will compile data from Medicare and Medicaid patients diagnosed with autism spectrum disorder. Health Secretary Robert F. Kennedy Jr. said the goal is to investigate the causes of autism and chronic diseases. The National Institutes of Health (NIH) and the Centers for Medicare and Medicaid Services (CMS) will manage the project.
Focus on Root Causes and Chronic Conditions
The initiative, part of a broader $50 million research effort, will examine autism’s root causes using real-world data. The new platform will analyze claims data, electronic health records, and wearable device information. Over time, it will also support research into other chronic health conditions. Kennedy said the platform will operate with transparency and accountability, promising long-awaited answers for families.
Concerns from the Scientific Community
Autism researchers expressed skepticism about the project’s stated goals. Dr. Helen Tager-Flusberg of Boston University said the database would mainly enable analysis of healthcare access and outcomes, not causes. She also criticized the plan for overlapping with existing NIH resources, such as the National Database for Autism Research, which recently became inaccessible without explanation.
Privacy and Transparency Remain Unclear
The database’s creation follows earlier denials from HHS that a new autism registry was in development. Kennedy later confirmed to Fox News that a voluntary registry would exist. HHS stated the platform would follow privacy laws, but has not clarified if participation will be voluntary or if data will be anonymized. HHS, NIH, and CMS did not respond to requests for clarification.
Experts Highlight Data Limitations and Gaps
Researchers note that Medicaid and Medicare data exclude people with private insurance or no coverage. Data inconsistencies also arise as individuals move on and off Medicaid. Experts warn that the dataset lacks environmental exposure details—an area of particular interest to Kennedy, who has linked environmental toxins to autism, a claim widely disputed by scientists.
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Kennedy launches US autism project using Medicare and Medicaid data
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