RFK Jr. set to launch disease registry tracking autistic people

Summary

RFK Jr. is using private medical records to create a registry of people with autism in the United States.

The National Institutes of Health is helping to collect private medical records from government and commercial databases, including “prescription records from pharmacies, lab testing, and genomics records from the Department of Veterans Affairs and Indian Health Service, private insurance claims, and data from smartwatches and fitness trackers.”

Kennedy, a longtime critic of vaccination, has made the study of autism one of HHS’s primary goals. He has called autism “preventable” and claimed “he can find a cure for the condition by September.”

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frostysauce 8 points a year ago

Robert F. Kennedy Jr. is using private medical records to create a registry of people with autism in the United States.

That's a pretty big claim for which The New Republic cited absolutely no source. This is bullshit, I hate the Administration as much as anyone here but I'm not falling for this.

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polyploy 24 points a year ago

Here's a different source for you.

The National Institutes of Health will begin collecting Americans' private health records as part of Health and Human Services Secretary Robert F. Kennedy Jr.'s controversial plan to discover a cause and a cure for autism. NIH Director Jay Bhattacharya told a panel of experts about the plan this week.

The NIH plans to gather information from a wide range of private sources, including pharmacy chains, hospitals and wearable devices with health sensors, like smartwatches.

"The idea of the platform is that the existing data resources are often fragmented and difficult to obtain. The NIH itself will often pay multiple times for the same data resource," Bhattacharya told the panel, according to The Guardian. "Even data resources that are within the federal government are difficult to obtain."

The NIH did not return a request for comment.

Kennedy has made autism research a central pillar of his role as America's official health advocate. He has made a number of conspiratorial, anti-science claims, including that childhood vaccinations could cause autism, despite overwhelming evidence to the contrary.

Earlier this month, he called autism an "epidemic" and vowed to find an "environmental toxin" responsible for the disorder by September.

"Overall autism is increasing in prevalence at an alarming rate," Kennedy told reporters at the time. "We're going to get back to it with an answer to the American people very, very quickly."

He further described autism as "a preventable disease."

[...]

Bhattacharya, the NIH director, also has a controversial background in the medical community, questioning early on the lethality of COVID-19 and being a vocal opponent to lockdown mandates.

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frostysauce 10 points a year ago

Thank you, I appreciate that.

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