HHS Clarifies: No New Autism Registry Will Be Created

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The U.S. Department of Health and Human Services (HHS) said it will not create a new autism registry, reversing an earlier announcement from the National Institutes of Health (NIH).

“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,” an NIH official told CBS News.

NIH Director Dr. Jay Bhattacharya previously announced plans to develop “national disease registries, including a new one for autism” as part of a larger research effort. 

His comments sparked backlash from advocacy groups and autism researchers, who raised concerns about patient privacy.

Some autism care providers even received requests from patients to remove their data and cancel appointments, federal health officials told CBS News.

The reversal was first reported by STAT News.

The HHS official did not clarify whether Bhattacharya misspoke or why the decision was reversed. Bhattacharya did not respond to requests for comment.

The NIH will now move forward with a $50 million project to better understand autism spectrum disorder (ASD) and other chronic diseases. 

The effort will use existing data from which information identifying individual patients has been removed. NIH will partner with agencies like the Centers for Medicare and Medicaid Services (CMS), CBS News reported.

“These efforts are not about tracking individuals. All NIH-managed databases follow the highest standards of security and privacy, with the protection of personal health information as a top priority,” the NIH explained.

Bhattacharya said he hopes grants for autism research will be awarded by September. However, he noted that scientific progress takes time, saying, “It’s hard to guarantee when science will make an advance. It depends on, you know, nature has its say.”

More information

The Mayo Clinic has more on autism spectrum disorder.

SOURCE: CBS News, April 28, 2025

Source: HealthDay

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