General Discussion
Related: Editorials & Other Articles, Issue Forums, Alliance Forums, Region ForumsRFK 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*

hlthe2b
(109,246 posts)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)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)Trump is already on record telling his nephew that he should let his disabled son die.
yardwork
(66,314 posts)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)
Name removed Message auto-removed
womanofthehills
(9,671 posts)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. Bhattacharyas 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. Bhattacharyas 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)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 Floridas 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)I would feel the same way no matter who wanted it, but especially with this psychotic bunch in power.
DemocratSinceBirth
(100,905 posts)My mind immediately goes to a European regime in the thirties and forties.
ShazzieB
(20,310 posts)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)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.
orangecrush
(24,286 posts)Maru Kitteh
(30,091 posts)Can we add him to Orrexs thread?
DemocratSinceBirth
(100,905 posts)womanofthehills
(9,671 posts)Millions of autistic moms have been following him for years. Thats 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 wasnt 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 Childrens 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 its still in multi dose flu vaccines. There are about 6 or 7 flu vaccines so I think its a good idea to ask your pharmacy for the mercury free ones. Aluminum is the adjuvant that has taken mercurys 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.
DemocratSinceBirth
(100,905 posts)WhiskeyGrinder
(24,718 posts)Silent Type
(9,020 posts)Registry is not necessarily a bad idea.
Response to Silent Type (Reply #9)
Name removed Message auto-removed
Silent Type
(9,020 posts)a good thing.
GusBob
(7,875 posts)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
Ping Tung
(2,165 posts)Prairie Gates
(4,909 posts)































Passages
(2,638 posts)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.
UTUSN
(73,902 posts)uponit7771
(92,746 posts)Johnny2X2X
(22,772 posts)These people are evil.
Tree Lady
(12,363 posts)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.