HHS Clarifies: No New Autism Registry Will Be Established

The U.S. Department of Health and Human Services (HHS) has announced that it will not proceed with creating a new autism registry, effectively reversing a previous statement made by the National Institutes of Health (NIH). Initially, NIH Director Dr. Jay Bhattacharya had indicated plans to develop 'national disease registries,' including one specifically for autism, as part of broader research initiatives. However, recent statements from HHS clarify that no such registry will be built. Instead, the focus will be on leveraging existing datasets through a real-world data platform to support research into the causes of autism and to improve treatment strategies.

This decision was prompted by significant backlash from advocacy groups and autism researchers concerned about privacy issues. Some healthcare providers also received requests from patients to withdraw their data and cancel appointments, highlighting community concerns over data security.

The NIH emphasized that their current efforts involve a $50 million project aimed at understanding autism spectrum disorder (ASD) and other chronic conditions. This project will utilize de-identified data from existing sources, including partnerships with agencies like the Centers for Medicare and Medicaid Services (CMS). The NIH reassured that these activities adhere to the highest privacy and security standards, with a primary goal of advancing scientific knowledge rather than tracking individuals.

While the initial plan to establish a new autism registry has been halted, NIH officials hope to award grants for autism research by September, acknowledging that meaningful scientific progress requires patience and time. They stressed that findings depend on natural research processes and that the efforts aim to foster understanding and better care for individuals with autism.

For more information on autism spectrum disorder, visit the Mayo Clinic's resource page.

Source: https://medicalxpress.com/news/2025-04-hhs-autism-registry.html