Kennedy unveils autism research plan using Medicare and Medicaid data

HEALTH:

US federal health agencies will develop a national database of autism patients enrolled in Medicare and Medicaid, Health and Human Services (HHS) Secretary Robert F. Kennedy Jr said on Wednesday.

The initiative is aimed at supporting research into the causes of autism spectrum disorder (ASD) and could later expand to include other chronic conditions, according to the department.

Kennedy, who has publicly supported a discredited theory linking vaccines to autism, said the effort would bring “full transparency and accountability” and offer families long-awaited answers.

The National Institutes of Health (NIH) and the Centers for Medicare and Medicaid Services (CMS) will collaborate on building the platform. It will aggregate real-world data from claims, electronic health records, and wearable devices, HHS said.

The project is part of a broader $50 million research campaign to explore autism’s origins—a neurological condition that affects communication, behaviour and learning.

Researchers will be able to study autism diagnoses over time, treatment outcomes, access to care, health disparities, and the economic impact on families.

But not all experts are convinced the new initiative will deliver on its central aim.

“These areas don’t address the root causes of autism,” said Dr Helen Tager-Flusberg, director of the Center for Autism Research Excellence at Boston University.

She noted that a similar NIH database had already existed for over a decade but had recently gone offline without explanation.

Eric Rubenstein, another autism researcher at Boston University, said researchers have used Medicare and Medicaid data for years.

It is helpful for studying disparities, he said, but lacks data on environmental exposures—an area Kennedy has pledged to examine.

Kennedy said the new registry would be voluntary and would not collect private information. HHS stated the project would adhere to privacy laws but did not confirm whether data would be anonymised.

NIH, HHS and CMS declined to provide further details on how the data would be used or managed.

Kennedy has said the NIH will determine the causes of autism by September—a timeline most scientists view as unrealistic.

Autism now affects 1 in 31 US children aged eight, according to the Centers for Disease Control and Prevention.

Experts believe a mix of genetic and environmental factors likely contributes to the condition, alongside improved detection and diagnosis.