The Blubber

The National Institutes of Health is assembling private medical records from a range of federal and commercial sources to support a new autism research effort spearheaded by Health and Human Services Secretary Robert F. Kennedy Jr., NIH Director Dr. Jay Bhattacharya announced Monday.

This data aggregation will provide external researchers selected for Kennedy’s autism studies with access to “comprehensive” patient data spanning a wide swath of the U.S. population for the first time, Bhattacharya said during a presentation to the agency’s advisory board.

“The idea behind the platform is that existing data sources are often siloed and hard to access. The NIH frequently ends up paying multiple times for the same data. Even within federal agencies, data can be difficult to obtain,” Bhattacharya explained.

Data will include medication histories from national pharmacy chains, lab and genomic results from patients in the VA and Indian Health Service, private insurance claims, and information gathered from wearable devices like smartwatches and fitness trackers.

The NIH is also working to expand its data-sharing agreements with the Centers for Medicare and Medicaid Services, Bhattacharya noted.

A new national disease registry focused on autism is also being launched and will be integrated into the database. Advocacy groups have criticized Kennedy’s description of autism as a "preventable disease," calling it misleading and stigmatizing.

Between 10 and 20 independent research groups will receive grants and access to the records to carry out Kennedy’s autism studies. While Bhattacharya didn’t detail the selection criteria, he said the process would follow standard NIH procedures.

The studies are expected to include “the highest quality proposals” across basic science, epidemiology, and applied research to better understand, treat, and manage autism. Bhattacharya emphasized the spectrum nature of autism, acknowledging its diverse range of effects.

“I recognize that autism presents in many forms—from highly functioning individuals to those with significant disabilities. The research will reflect that full range,” he said.