U.S. Health department denies plans for autism registry despite NIH director's comments

CHATTANOOGA, Tenn. — Recent comments from U.S. Secretary of Health and Human Services Robert F. Kennedy Jr. about a 'push for solutions' to what he says is a rise in autism is raising alarm bells for advocates.

In a Monday council meeting, the head of the National Institute of Health said they are creating a new National Disease Registry for Autism.

But when we reached out to the Department of Health and Human Services Thursday to ask if patients can opt out, they told us they have no plans to create 'an autism registry.'

"We are not creating an autism registry. The real-world data platform will link existing datasets to support research into causes of autism and insights into improved treatment strategies."

That's despite National Institute of Health Director Dr. Jay Bhattacharya saying this in a NIH council meeting Monday...

The platform will accelerate research and create new opportunities for cross agency use of data in real time, health monitoring, developing national Disease registries, including one a new one for autism.

This all started when Health and Human Services Secretary Robert F. Kennedy Junior said on April 16th...

"For the last 20 years, we've collected data, but not made real progress in understanding what causes autism or how to effectively prevent it or treat it effectively," RFK Jr. said. "We are going to have updated real time data so that people can look at this. Americans can understand what is happening with chronic disease in this country."

Dr. Bhattacharya told the council they will gather data from pharmacy chains, medical records, wearables like smart watches and fitness trackers.

After Health and Human Services Secretary Robert F Kennedy Jr. made this comment, those who advocate for people with autism started speaking against it. Dave Buck with the Chattanooga Autism Center said...

"The first part that strikes me is the insulting way that he's talking about curing someone who, my friends are proud of their autism. They're proud of being autistic, and so that right there makes me not trust this person. I would not want any data shared with groups that have that kind of mindset."

As questions remains about how data will be collected and stored, privacy concerns remain.

Buck says...

"Breaking the trust of individuals who have an expectation of privacy of their medical information... this just seems like an immediate violation of privacy."

In response to privacy concerns, Dr. Bhattacharya said Monday...

"The real world data platform will preserve the privacy of patients, sort of within the context of the platform itself. Researchers will be able to do their work on the platforms, but will not be able to download the data themselves."

Autism Spectrum Disorder (ASD) affects approximately 1 in 31 children, according to 2025 Centers for Disease Control and Prevention (CDC) data.