HHS Clarifies: No New Autism Registry Will Be Created
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
Kids with High BP May Face Risk of Early Heart Disease Death as Adults
MONDAY, Sept. 8, 2025 — A heart health journey may start much earlier than once thought, as new research shows that kids with higher blood pressure at age 7 had a sharply...
Space Travel Accelerates Cellular Aging, Researchers Say
MONDAY, Sept. 8, 2025 — Space travel takes a significant toll on the human body, and a new study reveals that it can speed up the aging of crucial blood and immune...
Cats Get Dementia Just Like People, Making Them a Potential Research Tool
SATURDAY, Sept. 6, 2025 — Just like their human counterparts, cats may act cranky or confused and have trouble sleeping as they age. They may even yowl more than...
More news resources
- FDA Medwatch Drug Alerts
- Daily MedNews
- News for Health Professionals
- New Drug Approvals
- New Drug Applications
- Drug Shortages
- Clinical Trial Results
- Generic Drug Approvals
Subscribe to our newsletter
Whatever your topic of interest, subscribe to our newsletters to get the best of Drugs.com in your inbox.