The US Department of Health and Human Services (HHS) is launching a $50 million research initiative to better understand the causes of autism spectrum disorder and improve treatments, contradicting earlier reports of a registry for Americans with autism.
NIH Director Jay Bhattacharya announced plans to create such a registry at an internal meeting, sparking widespread panic among autism advocates and researchers. The community was alarmed by his statements about accessing health data from private sources, including electronic records, insurance claims, and wearable devices.
The NIH already maintains several existing registries for various diseases, but Bhattacharya’s comments raised concerns among those with autism and beyond. His remarks led to a backlash on social media, as many expressed their fears about the potential impact on personal health data.
Source: https://www.statnews.com/2025/04/24/no-new-autism-registry-hhs-says-contradicting-nih-director-jay-bhattacharya-claim