WASHINGTON -Federal health agencies will create a database of autism patients enrolled in Medicare and Medicaid that researchers will use to study the causes of autism spectrum disorder, U.S. Health and Human Services Secretary Robert F. Kennedy Jr said on Wednesday.
“We’re pulling back the curtain, with full transparency and accountability, to deliver the honest answers families have waited far too long to hear,” Kennedy, who has long promoted a debunked link between vaccines and autism, said in a statement.
The department said the National Institutes of Health and the Centers for Medicare and Medicaid Services will partner to build a real-world data platform enabling advanced research across claims data, electronic medical records, and wearable health-monitoring devices.
The project is part of a wider $50 million research effort Kennedy is launching to identify the causes of autism, which he characterizes as an epidemic that can be prevented.
Autism is a neurological and developmental condition marked by disruptions in brain-signaling that cause people to behave, communicate, interact, and learn in atypical ways.
Last month, HHS had denied it was creating a new autism registry following media reports that NIH Director Jay Bhattacharya told staff the agency would create one.
HHS said the new platform will first focus on research around the root causes of autism and, in the long term, link data for research on other chronic conditions.
The agencies said the project will comply with privacy laws but did not specify if the data will be anonymous. HHS, NIH, and CMS did not immediately respond to requests for comment.
Researchers will focus on autism diagnosis over time, health outcomes from medical and behavioral interventions, access to care and disparities by demographics and geography as well as the economic burden on families and healthcare systems.
On Monday, Kennedy told Fox News there would be a registry. “Every other disease like this has a registry … and it’s voluntary,” he told Fox. “It’s not private information. It’s not information that is going to go out to other agencies. It’s a voluntary system where your privacy is protected.”
Last month, Kennedy said NIH would determine by September what causes the condition, a question that has eluded scientists for decades. A week later, he said that “some of the answers” would be available by then.
Rates of autism spectrum disorder among U.S. children reached a record level in 2022, with 1 in every 31 8-year-olds affected, according to the U.S. Centers for Disease Control and Prevention.
Kennedy, a former environmental lawyer, suggested last month that environmental toxins are behind rising prevalence. Kennedy said he plans to look at everything from mold to medicine to identify the cause.
The causes of autism are unclear, although experts say it likely results from a combination of genetic and environmental factors, including the age of parents at conception. Many experts attribute much of the increase in the autism rate to more-widespread screening and relatively recent inclusion of a broader range of behaviors to define the condition.
There are no treatments or cures for autism, nor can it be reversed. However, experts agree that early diagnosis is crucial. Intervention with supportive measures, ideally before age three, is critical for improving cognitive, social and communication skills.
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