What You Need to Know About the New Autism Data Registry (and How to Stay Safe)

Doubt it. They seem to do what they want, back of temporarily, and then keep going.

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I think they do that thing where they make outrageous claims up front, then after the public outcry they they walk it back slightly to a point that is still way too far, but that seems less severe by comparison. They do seem to have reached a wall with his particular issue, from what I’ve been seeing. People are recognizing it for what it is.

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Update: The registry is back in action, but this time they are only planning to target people on Medicare and Medicaid. This will be a test program that they intend to expand outward to other chronic illnesses over time.

https://www.npr.org/2025/05/08/nx-s1-5391310/kennedy-autism-registry-database-hhs-nih-medicare-medicaid

The Department of Health and Human Services said in a statement on Wednesday that the NIH would team up with the Centers for Medicare & Medicaid Services (CMS) to create the database utilizing insurance claims, electronic medical records and data from wearable devices with health sensors, like smartwatches.

“We’re using this partnership to uncover the root causes of autism and other chronic diseases,” HHS Secretary Robert F. Kennedy Jr. said in a statement.

HHS said that CMS and NIH would establish a data use agreement focused on Medicare and Medicaid enrollees — about 36% of Americans — and follow autism diagnoses before expanding their research into additional chronic health conditions.

“Using ASD [Autistic Spectrum Disorders] as the pilot research program, teams at CMS and NIH will establish a secure tech-enabled mechanism to enhance this data sharing with timely, privacy and security compliant data exchange,” the statement read.

Those living in the state of Illinois will be protected from this data collection program

Want to bet an executive order declares a national emergency making access legally necessary?

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I gotta be honest, this one is kicking up my paranoia symptoms, and making it a challenge to stick to known facts. Especially because the facts keep changing daily.

I would guess that they switched it from everyone to “just the poors” because they were hoping there would be less public outcry this way. I really hope it doesn’t work that way. I hope people raise just as much fuss.

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I’m kinda panicking about this too. It helps to try to stay grounded and focus on the here/now.

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The only thing we can do is speak out.

I’ve got parents of autistic children in my FB community, so I try to share this info when I can.

Thanks for passing it along.

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People can write/call their governors and ask them to follow suit with making executive orders banning data collection. It’s not much, but it’s something. And then hopefully there will be a lawsuit pushing back against the clear violation of constitutional liberties. It doesn’t feel like enough, but it is something.

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Making lists doesn’t end well

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