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Nevilledog

(54,098 posts)
Tue Apr 22, 2025, 10:28 AM Tuesday

RFK wants a new "disease registry" to track autistic people

https://www.cbsnews.com/news/rfk-jr-autism-study-medical-records/

The National Institutes of Health is amassing private medical records from a number of federal and commercial databases to give to Health and Human Services Secretary Robert F. Kennedy Jr.'s new effort to study autism, the NIH's top official said Monday.

The new data will allow external researchers picked for Kennedy's autism studies to study "comprehensive" patient data with "broad coverage" of the U.S. population for the first time, NIH Director Dr. Jay Bhattacharya said.

"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. Even data resources that are within the federal government are difficult to obtain," he said in a presentation to the agency's advisers.

Medication records from pharmacy chains, lab testing and genomics data from patients treated by the Department of Veterans Affairs and Indian Health Service, claims from private insurers and data from smartwatches and fitness trackers will all be linked together, he said.

The NIH is also now in talks with the Centers for Medicare and Medicaid Services to broaden agreements governing access to their data, Bhattacharya said.

*snip*
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RFK wants a new "disease registry" to track autistic people (Original Post) Nevilledog Tuesday OP
He wants to enroll in a cohort study--which is VOLUNTARY with Human Subjects Review Protections but is to Ignorant hlthe2b Tuesday #1
It's hard not to view this as very ominous. yardwork Tuesday #2
To put an armband on them. mercuryblues Tuesday #3
RFK, Jr. is saying horrible things about people with autism. yardwork Tuesday #5
Post removed Post removed Tuesday #17
Actually - the quote is from Jay Bhattachara head of NIH womanofthehills Tuesday #15
I don't care who is quoted. That does not change hlthe2b Tuesday #20
Somebody else got a mandatory registry. Fuck that. mn9driver Tuesday #4
Why would MAGA want to register people with disabilities? DemocratSinceBirth Tuesday #6
I don't know about MAGA, but I think RFK Jr wants to collect data to help him "prove" that vaccines cause autism. ShazzieB Tuesday #23
Here are some links related to vaccines and autism, as well as RFK Jr's activities in this area. ShazzieB Tuesday #24
THIS orangecrush Tuesday #29
That man is SO GROSS. So gross. Maru Kitteh Tuesday #7
A parent would have to be out of their mind to put their child on that registry. DemocratSinceBirth Tuesday #8
You guys don't realize that Kennedy has a following of autism moms womanofthehills Tuesday #22
I started a poll DemocratSinceBirth Tuesday #25
You need to stop saying "autistic moms" because these are mothers of autistic kids, not moms with autism. WhiskeyGrinder Tuesday #28
Cancer and other disease registries have been around for decades. While I don't trust trump or his henchman, an autism Silent Type Tuesday #9
Post removed Post removed Tuesday #10
Still don't have a problem with cancer and other registries. Heck, there have been Autism registries too. Research is Silent Type Tuesday #11
I tend to agree, setting aside the autism stuff GusBob Tuesday #16
Why did he leave out toenail fungus and jock itch? Ping Tung Tuesday #12
Good Lord! Prairie Gates Tuesday #13
He is stating a LIE, a lie that will hurt so many innocent people with autism. Passages Tuesday #14
"registries" sound like waiting lists for concentration camps. UTUSN Tuesday #18
Sounds like Hitler's T4 plan uponit7771 Tuesday #19
He will just skip to the part where they just tattoo their arms and make them wear a big symbol on their clothes Johnny2X2X Tuesday #21
My 19 yr old grandson with aspergers Tree Lady Tuesday #26
Next up, "registries" of women who have had abortions. Diamond_Dog Tuesday #27

hlthe2b

(109,246 posts)
1. He wants to enroll in a cohort study--which is VOLUNTARY with Human Subjects Review Protections but is to Ignorant
Tue Apr 22, 2025, 10:30 AM
Tuesday

and Arrogant and has fired all the people at CDC and NIH who conduct such studies.

So, he thinks he can demand a mandatory registry? COURTS? Your turn.

yardwork

(66,314 posts)
2. It's hard not to view this as very ominous.
Tue Apr 22, 2025, 10:34 AM
Tuesday

The NIH has been funding autism research for years, with all the protections you mention.

Trump's minions defunded all that research, fired the scientists who oversee the studies and ensure patient protections - and now they want to get the names of people with autism to do.... what?

Very ominous.

mercuryblues

(15,563 posts)
3. To put an armband on them.
Tue Apr 22, 2025, 10:39 AM
Tuesday

Trump is already on record telling his nephew that he should let his disabled son die.

yardwork

(66,314 posts)
5. RFK, Jr. is saying horrible things about people with autism.
Tue Apr 22, 2025, 10:47 AM
Tuesday

He pretends to care but his actions speak loudly.

Trump and his minions are targeting what they label "undesirables." Anyone who isn't white, straight, cis gender, Christian (preferably Protestant), and "able-bodied" is a target. Uppity women are targets. People with academic degrees are targets. Teachers are targets. Health care providers who insist on delivering health care based on best practices instead of folk remedies are targets. Artists and writers and historians are targets.

Listen to the words they say and watch what they do. They view anybody who is different from their Aryan ideal as enemies. We are "poisoning the blood" of "true Americans."

This is straight out of the Nazi playbook. Literally.

Response to mercuryblues (Reply #3)

womanofthehills

(9,671 posts)
15. Actually - the quote is from Jay Bhattachara head of NIH
Tue Apr 22, 2025, 01:30 PM
Tuesday

Bhattacharya is a physician who was teaching at Stanford and is new head of NIH

Bio
Jay Bhattacharya is a Professor of Medicine at Stanford University. He is a research associate at the National Bureau of Economics Research, a senior fellow at the Stanford Institute for Economic Policy Research, and at the Stanford Freeman Spogli Institute. He holds courtesy appointments as Professor in Economics and in Health Research and Policy. He directs the Stanford Center on the Demography of Health and Aging. Dr. Bhattacharya’s research focuses on the economics of health care around the world with a particular emphasis on the health and well-being of vulnerable populations. Dr. Bhattacharya’s peer-reviewed research has been published in economics, statistics, legal, medical, public health, and health policy journals. He holds an MD and PhD in economics from Stanford University.

hlthe2b

(109,246 posts)
20. I don't care who is quoted. That does not change
Tue Apr 22, 2025, 01:54 PM
Tuesday

Last edited Tue Apr 22, 2025, 02:35 PM - Edit history (1)

The issue at hand and if he is that ignorant to not know what would be required with a MANDATED registry as opposed to an IRB -approved and VOLUNTARY cohort study then HE is either being misquoted, or holds no more expertise than RFK or Florida’s “Stanford-trained” but anti-vax moron that DeSantis holds out as an infectious disease/ public health expert despite no specific training in those fields.

You do not want to promote this BS. I can assure you that you do not. I put my decades of work for an unnamed Federal agency (for what should be obvious reasons) and two academic appointments-- actually conducting such studies-- against him or anyone else. I can only hope he was misquoted.

mn9driver

(4,712 posts)
4. Somebody else got a mandatory registry. Fuck that.
Tue Apr 22, 2025, 10:41 AM
Tuesday

I would feel the same way no matter who wanted it, but especially with this psychotic bunch in power.

DemocratSinceBirth

(100,905 posts)
6. Why would MAGA want to register people with disabilities?
Tue Apr 22, 2025, 10:53 AM
Tuesday

My mind immediately goes to a European regime in the thirties and forties.




ShazzieB

(20,310 posts)
23. I don't know about MAGA, but I think RFK Jr wants to collect data to help him "prove" that vaccines cause autism.
Tue Apr 22, 2025, 05:00 PM
Tuesday

He's been obsessed with the idea for years now., deades even. First it was the dtap vaccine, but I think (although I'm not sure) he switched over to the MMR vaccine, based on Andrew Wakefield's discredited work (Google Andrew Wakefield if you're not familiar with that whole saga). Basically, RFK Jr thinks vaccines cause autism, so it doesn't surprise me at all that he is proposing a registry for people with autism.

As much as I dislike the man, I doubt he has euthanasia in mind. I think he actually wants to help people with autism and their families but has let crackpot conspiracy theories pull him down the wrong rabbit holes.

That's NOT to say he isn't a dangerous person to be put in charge of the nationxs public health. He definitely IS, no doubt about it. And there's no telling what the Orange Hellbeast might eventually decide to do with information like this.

ShazzieB

(20,310 posts)
24. Here are some links related to vaccines and autism, as well as RFK Jr's activities in this area.
Tue Apr 22, 2025, 06:07 PM
Tuesday

The links below are for anyone interested in knowing more about RFK Jr's antivaxx activism and why his claims are false. They are all from the past five months; the first one is the most recent. These are all from a quick Google search, and I haven't gone over them all with a fine toothed comb; however, they are from sources I believe to be trustworthy.

https://www.theguardian.com/commentisfree/2025/apr/20/autism-vaccines-robert-f-kennedy-jr-usa-donald-trump

https://healthjournalism.org/blog/2024/12/what-to-know-about-robert-f-kennedy-jrs-anti-vaccine-advocacy/

https://www.annenbergpublicpolicycenter.org/factcheck-org-kennedy-cites-flawed-paper-in-bid-to-justify-vaccine-autism-link/

https://www.statnews.com/2025/02/03/vaccine-autism-rfk-jr-how-science-proves-vaccines-do-not-cause-autism/

https://www.cnn.com/2025/04/10/health/kennedy-autism-causes/index.html

There is lots, lots, lots more info available out there. I have not included any links that support RFK Jr's claims, because I believe they have all been thoroughly discredited. If anyone wants to investigate that stuff, feel free to do so. I do not wish to be party to that by providing any of those links.





womanofthehills

(9,671 posts)
22. You guys don't realize that Kennedy has a following of autism moms
Tue Apr 22, 2025, 02:08 PM
Tuesday

Millions of autistic moms have been following him for years. That’s how he got his 10% ratings in some states in the primaries. Trump wanted him for that 10% of voters.

In 2007 when Kennedy worked with River Keepers cleaning up mercury from the Hudson River - autistic moms contacted him because they believed mercury in kids vaccines & teeth contributed to their kids autism. He wasn’t really interested but they said they were not taking no for an answer. So on 2007, the World Mercury Project was born and Kennedy became the chairman of the World Mercury Project - looking at Mercury that was then used in childhood vaccines . Around 2013 - that agency turned into Children’s Health Defence run by moms of autistic kids. Kennedy chaired CHD for 8 yrs. CHD has millions of autistic moms following Kennedy.

Like them or not, CHD has millions in funding from subscribers, puts out many daily podcasts on autism and has an Autism bus that travels around the US meeting parents of autistic kids & the kids at each stop., They put kids pictures on the walls of the bus from each stop they make.

Mercury was removed from childhood vaccines but CDC on their website says it’s still in multi dose flu vaccines. There are about 6 or 7 flu vaccines so I think it’s a good idea to ask your pharmacy for the mercury free ones. Aluminum is the adjuvant that has taken mercury’s place in dead virus vaccines. Live virus vaccines like MMR do not need aluminum.

CDC- https://www.cdc.gov/flu/vaccine-safety/thimerosal.html

“ Thimerosal is an ethyl mercury-based preservative used in vials that contain more than one dose of a vaccine (multi-dose vials) to prevent germs, bacteria and/or fungi from contaminating the vaccine.”

WhiskeyGrinder

(24,718 posts)
28. You need to stop saying "autistic moms" because these are mothers of autistic kids, not moms with autism.
Tue Apr 22, 2025, 09:20 PM
Tuesday
Like them or not, CHD has millions in funding from subscribers, puts out many daily podcasts on autism and has an Autism bus that travels around the US meeting parents of autistic kids & the kids at each stop., They put kids pictures on the walls of the bus from each stop they make.
So the fuck what. They're still a bunch of dangerous quacks who are actively hurting people because they think kids dead from preventable diseases are better than kids with ADHD or autism. Grow up.

Silent Type

(9,020 posts)
9. Cancer and other disease registries have been around for decades. While I don't trust trump or his henchman, an autism
Tue Apr 22, 2025, 11:13 AM
Tuesday

Registry is not necessarily a bad idea.

Response to Silent Type (Reply #9)

Silent Type

(9,020 posts)
11. Still don't have a problem with cancer and other registries. Heck, there have been Autism registries too. Research is
Tue Apr 22, 2025, 01:05 PM
Tuesday

a good thing.

GusBob

(7,875 posts)
16. I tend to agree, setting aside the autism stuff
Tue Apr 22, 2025, 01:32 PM
Tuesday

Long range and ongoing comprehensive studies of diseases can be and has been beneficial.

In my profession, one such study was ground breaking and the results lead to much knowledge and treatment of the condition

That study was NIH and University conducted however which is not likely with this bunch

They will most likely be a hammer looking for a nail.

I work for the IHS and am contemplating what insight our medical info has on autism

Passages

(2,638 posts)
14. He is stating a LIE, a lie that will hurt so many innocent people with autism.
Tue Apr 22, 2025, 01:19 PM
Tuesday

His LIE is that he knows autism is a preventable disease, and that is totally unfounded. He knows NOTHING about autism..he knows only what he filters through his off-the-cuff, idiotic sources.


This man wants to invade data to manipulate it...... he should be fired.

I despise this God damn menace.

Johnny2X2X

(22,772 posts)
21. He will just skip to the part where they just tattoo their arms and make them wear a big symbol on their clothes
Tue Apr 22, 2025, 01:57 PM
Tuesday

These people are evil.

Tree Lady

(12,363 posts)
26. My 19 yr old grandson with aspergers
Tue Apr 22, 2025, 09:10 PM
Tuesday

is very upset by this. He is struggling with junior college and dropped out, living with my daughter and trying to figure out what to do. He has had great help all his life and did well in school with some help but being on his own was overwhelming.

He is very smart and paying attention to what's happening. It's the social part and staying still, he paces a lot.

Right now he is learning a foreign language for something to do. My daughter told him you need a purpose doesn't matter what it is.

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