Will there be an autism registry? What we know after NIH drops plans for vast data platform
An autism science group called out "red flags" this week after the National Institutes of Health appeared to share plans for an autism registry in a meeting on April 21. Now, the U.S. Department of Health and Human Services denies it is doing so.
NIH Director Dr. Jay Bhattacharya shared the initiative that could create "disease registries" to research autism in a presentation about his vision for the department at a Council of the Council's meeting on April 21, as CBS News first reported.
The registries came up as part of an initiative to create a "real-world data platform" that would pull together data from the public and private sectors to support research.
The Autism Science Foundation said the program raised concerns over privacy and confidentiality. On Friday, April 25, an HHS official told Paste BN it is not creating such a registry. Here is what we know:
NIH director announces 'real-world data platform'
Bhattacharya acknowledged HHS Secretary Robert F. Kennedy Jr.'s directive to find the cause of autism by September.
"To this end, we're launching an initiative to accelerate the understanding of causes...and treatment," Bhattacharya said at the meeting. "What we're going to do at the NIH is launch a real-world data platform. The idea of the platform is that the existing data, data resources are often fragmented and difficult to obtain."
The data platform could bring together public data from federal agencies and also the private sector, Bhattacharya said, mentioning pharmacy chain data, electronic health records, environmental exposure data and data from wearable sensors like smart watches and fitness trackers.
"By bringing these data together in place ... 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," he said, and added that the platform could also help in "enabling faster drug development, enabling launch tool data sets to better understand the progression of disease and launching national competitions, as well as research programs for innovative and cutting-edge research to answer key questions."
He assured the program would preserve and protect the privacy of patients.
Health and Human Services denies creating an autism registry amid privacy concerns
An HHS official told Paste BN that the department is not creating an autism registry, but is pursuing the real-world data platform to support research into the causes of autism and treatments. The official did not respond to Paste BN's clarifying questions about other disease registries or the use of privately held health data.
The official said NIH is investing $50 million in research for causes and improving treatments for autism.
The Autism Science Foundation said in a statement that the limited details provided has worried families about confidentiality.
"The use of registries and registry data in general can be a valuable tool in helping to understand the causes of diseases and disorders, but in this case, the lack of clarity around how data will be collected, shared, maintained and tested for accuracy raises red flags," the statement read.
RFK Jr. has made autism research priority as health secretary
Kennedy, who has voiced anti-vaccine views and shared debunked claims that vaccines cause autism, told President Donald Trump's cabinet earlier in April that the government would learn the cause of autism and be able to "eliminate those exposures."
Autism diagnoses have increased over the last quarter-century as scientists and researchers have searched for genetic and environmental factors contributing to it, but have come up empty-handed in most cases. The CDC says some people with autism spectrum disorder have a genetic condition, but other causes are unknown.
Kennedy's comments have been controversial, especially among some in the autism community who show pride for neurodivergence. Others in that community have welcomed his involvement.
(This story was updated to correct a typo and an inaccuracy.)
Contributing: Zac Anderson and Alyssa Goldberg, Paste BN
Kinsey Crowley is a trending news reporter at Paste BN. Reach her at kcrowley@gannett.com. Follow her on X and TikTok @kinseycrowley or Bluesky at @kinseycrowley.bsky.social.