No new autism registry, HHS says walking back NIH director’s claim

The Department of Health and Human Services (HHS) has clarified that they are not creating a new registry of Americans with autism, contrary to recent reports. Instead, HHS will be launching a $50 million research initiative to better understand the causes of autism spectrum disorder and enhance treatment options for individuals with autism.

This announcement comes in the wake of National Institutes of Health (NIH) Director Jay Bhattacharya’s statement about the intention to establish a registry for individuals with autism during an all-staff meeting. This declaration sparked confusion and concern within the autism community and the wider research field. Many were alarmed by Bhattacharya’s mention of accessing health data from private sources like electronic health records, pharmacy data, insurance claims, and even wearable devices such as smartwatches and fitness trackers.

While the NIH already maintains numerous registries for various diseases and regularly funds research on conditions like autism, the implications of Bhattacharya’s comments raised apprehensions among stakeholders. Some individuals took to social media to express their worries and uncertainties about the proposed registry and its potential implications.

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Overall, the HHS’s decision to focus on research efforts and understanding the complexities of autism spectrum disorder demonstrates a commitment to addressing the needs of individuals with autism and improving their quality of life through evidence-based interventions. Stay tuned for further updates on this evolving story as researchers and policymakers continue to explore ways to support individuals with autism and their families.