STAT+: No new autism registry, HHS says, walking back NIH director\u2019s claim
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The federal health department is not creating a new registry of Americans with autism, a Department of Health and Human Services official said in a written statement Thursday. Instead, the official said, HHS will launch a $50 million research effort to understand the causes of autism spectrum disorder and improve treatments.<\/p>\n
The announcement arrives two days after National Institutes of Health Director Jay Bhattacharya announced the intent to create such a registry<\/a> at an all staff meeting, kicking off a firestorm of panic and confusion among autism self-advocates and the broader research community. Much of the fear centered around Bhattacharya\u2019s remarks that the government would pull health data from private sources, such as electronic health records maintained by health care providers, pharmacy data, insurance claims and even wearables like smart watches and fitness trackers.<\/p>\n While the NIH has dozens of existing registries for diseases and routinely awards grants to study conditions such as autism, the NIH director\u2019s words chilled the community, leaving many people worried, including some who expressed their fears<\/a> on social media.<\/p>\n Continue to STAT+ to read the full story\u2026<\/a><\/p>\n<\/div>\n