RFK Jr. Eyes Medicare Data to Study Root Causes of Autism

The Trump administration is planning to advance research into the root causes of autism spectrum disorder through a partnership to build a data platform that utilizes medical claims data, electronic medical records, and data from consumer wearable devices.

The plan comes as Health and Human Services Secretary Robert F. Kennedy Jr. increases scrutiny of autism, which has raised concerns among patient advocacy groups.

The National Institutes of Health, working with the Centers for Medicare & Medicaid Services, will build the data platform, starting with a “data use agreement under CMS’ Research Data Disclosure Program focused on Medicare and Medicaid enrollees with a diagnosis of ASD,” said a Wednesday press release from the HHS.

“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,” said a statement from NIH Director Jay Bhattacharya.

The partnership will link real-world data in a manner consistent with applicable privacy laws to protect sensitive health information for research on other chronic conditions, which is a core priority of Kennedy, the statement said.

ASD affects 1 in 31 children in the US, the HHS said. The “need for multi-source, real-world data insights have never been more urgent,” the press release said.

In recent weeks, Kennedy has said autism was preventable, questioned government research on what may be causing an uptick of the disease in young children, and suggested environmental factors may be contributing to the spike.

In April, Kennedy hosted a press conference in which he said the HHS should have “some of the answers” behind what’s fueling autism by September. In speaking to a room full of reporters, he said the HHS planned on looking into things like mold, food additives, medicines, and ultrasounds, and how they could potentially be linked to autism.

Health policy experts have expressed some skepticism of Kennedy’s effort, calling his timeline for such studies too short and accusing him of trying to justify predetermined conclusions rather than follow the science.

The new research effort will focus on autism diagnosis trends, health outcomes from specific medical and behavioral interventions, access to care and disparities by demographics and geography, and the economic burden on families and health-care systems.

“This joint effort aligns with our shared goal of fostering innovation to improve Americans’ lives while safeguarding patient privacy,” said a statement from CMS Administrator Mehmet Oz.