Skip to main content

HHS Clarifies: No New Autism Registry Will Be Created

Medically reviewed by Carmen Pope, BPharm. Last updated on April 29, 2025.

By I. Edwards HealthDay Reporter

TUESDAY, April 29, 2025 — 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."

Sources

  • CBS News, April 28, 2025

Disclaimer: Statistical data in medical articles provide general trends and do not pertain to individuals. Individual factors can vary greatly. Always seek personalized medical advice for individual healthcare decisions.

© 2025 HealthDay. All rights reserved.

Posted April 2025

Read this next

Milwaukee Closes More Schools to Address Lead Crisis

WEDNESDAY, April 30, 2025 — Milwaukee will temporarily close two more elementary schools as it works to tackle a lead crisis in its public school buildings. The school...

New HHS Ad Campaign Urges Americans to 'Take Back Your Health'

WEDNESDAY, April 30, 2025 — U.S. Health and Human Services Secretary Robert F. Kennedy Jr. is preparing to launch a multimillion-dollar public health campaign, according to...

Medicaid 'Unwinding' Caused Drop In Insurance Coverage Among Working-Age Adults

WEDNESDAY, April 30, 2025 -- The “unwinding” of Medicaid that occurred after the end of the COVID-19 pandemic has left more working-age Americans without health...

More news resources

Subscribe to our newsletter

Whatever your topic of interest, subscribe to our newsletters to get the best of Drugs.com in your inbox.