What to know about reports RFK Jr. is launching registry to track Americans with autism
Why is there not a rating on this post? There's not enough verified evidence for us to definitively confirm or debunk this rumor. Contact us if you have credible information to share. We'll update this post as necessary.
On April 22, 2025, CBS News reported that the National Institutes of Health (NIH) plans to launch a "disease registry" to track Americans with autism as part of U.S. Department of Health and Human Services Secretary Robert F. Kennedy Jr.'s new effort to study the condition.
Almost immediately after CBS News published its story, social media users spread the publication's reporting on X, Facebook and Reddit. Other news outlets released their own stories based off of CBS' reporting, including MSNBC, The Guardian and U.S. News & World Report.
Kennedy has, in fact, described plans, in conjunction with NIH, to study "environmental factors" of autism (see video of his comments here, at 19:18 and 27:45). However, it was not possible as of this writing to independently verify CBS' report that these plans extend to an autism registry. CBS is considered a reputable news outlet — but NIH did not immediately respond to Snopes' inquiry asking for confirmation. Thus, we cannot give a truthfulness rating to the claim in question.
(As we have previously reported, contrary to Kennedy's assertion — see 18:44 — that there must be an "environmental toxin" to blame for an increase in autism diagnoses, experts believe there is no single cause of autism, and a rise in diagnoses can be attributed to factors such as increased awareness and better services. Experts and advocates for autistic people say Kennedy frequently perpetuates harmful and false stereotypes about autism; Snopes previously verified that Kennedy claimed, falsely, that autistic children will "never pay taxes," among other assertions.)
We reached out to the CBS reporter on this story, Alexander Tin, to ask if he might be able to provide more information on this registry, such as when it will launch and what specific information will be recorded. This story will be updated if either NIH or Tin respond.
NIH already keeps a list of registries for a vast number of medical diagnoses, including different types of cancers, autoimmune disorders and cerebral palsy. These registries provide researchers "first-hand information about people with certain conditions, both individually and as a group, and over time, to increase our understanding of that condition," per the health institute.
According to Tin's reporting, the NIH announced the autism registry during an April 21, 2025, meeting open to the public. As of this writing, video of this meeting is not yet available online, but a page on NIH's site says a recording will be posted under its "past events" webpage in the (unspecified) future.
It is likely the NIH discussed its autism research collaboration with Kennedy during the meeting reported on by CBS; presentation notes describing an "NIH Initiative" that involves "Understanding ASD" are available under the NIH April 21 agenda online, as well as at this link (see Slide 5). ASD is an acronym for autism spectrum disorder.
However, the presentation notes do not mention a registry for autistic Americans, instead focusing on the launch of a more comprehensive data platform — a platform that happens to be the main focus of the CBS story in question. According to CBS, NIH announced it is "amassing private medical records from a number of federal and commercial databases" to give to Kennedy in his effort to study autism. The NIH meeting presentation slides show discussion of an "NIH Real-World Data Platform" (see Slide 6) involving "broad coverage" of the U.S. population.
The autism registry will reportedly be part of this new data platform. The CBS story does not provide any additional details regarding the registry specifically, but that appears to be because the NIH didn't, either.
According to Tin's transcription of some of NIH Director Jay Bhattacharya's comments from the meeting, which the reporter posted a link to on X, Bhattacharya appeared to only mention the autism registry in passing (emphasis ours):
By bringing these data together in place, providing access to advanced computation resources and leveraging the latest techniques, the AI techniques, the platform will accelerate research and create new opportunities for cross agency use of data and real time health monitoring, developing national disease registries, including a new one for autism, enabling faster drug development, enabling longitudinal data sets to better understand the progression of disease and launching national competitions, as well as research programs for innovative and cutting edge research, to answer key questions such as the one on the etiology of autism.
Bhattacharya also said the data platform will "preserve the privacy of patients" through "state of the art protections." Tin's transcription did not include the full comments, nor an audio recording, so it was not possible to verify whether this is all that Bhattacharya said about the purported registry.
ABC News. "HHS Sec. RFK Jr. Announces Findings of Autism Survey Conducted by CDC: LIVE." YouTube, 16 Apr. 2025, www.youtube.com/watch?v=yly3zpXqa2s. Accessed 18 Apr. 2025.
Bhattacharya, Jay. "NIH Director's Update." National Institutes of Health, 21 Apr. 2025, dpcpsi.nih.gov/sites/default/files/2025-04/Council-of-Councils-04.21.25-Director-Update.pdf. Accessed 22 Apr. 2025.
CDC. "Autism Spectrum Disorder (ASD)." Autism Spectrum Disorder (ASD), 22 Feb. 2024, www.cdc.gov/autism/index.html. Accessed 22 Apr. 2025.
"Council of Councils > April 21, 2025 | DPCPSI." Nih.gov, 22 Apr. 2025, dpcpsi.nih.gov/council/april-21-2025-agenda. Accessed 22 Apr. 2025.
National Institutes of Health. "List of Registries." National Institutes of Health (NIH), 3 Sept. 2019, www.nih.gov/health-information/nih-clinical-research-trials-you/list-registries. Accessed 22 Apr. 2025.
"NIH Council of Councils." NIH VideoCasting, 2025, videocast.nih.gov/watch=56725. Accessed 22 Apr. 2025.
Tin, Alexander. "@NIH 'S @DrJBhattacharya Said This New 'Data Platform' Will Aim for 'Broad Coverage' of U.S. Population Https://Dpcpsi.nih.gov/Sites/Default/Files/2025-04/Council-of-Councils-04.21.25-Director-Update.pdf He Promised 'State of the Art Protections' for Patient Privacy and Said @SecKennedy 'S Autism Researchers Won't Download Data Https://Tinalexander.github.io/Notes/2025/04#Jay-Bhattacharya-On-Autism-Research-Plans." X (Formerly Twitter), 21 Apr. 2025, x.com/Alexander_Tin/status/1914467241820664266. Accessed 22 Apr. 2025.
---. "Jay Bhattacharya on Autism Research Plans." Github.io, 21 Apr. 2025, tinalexander.github.io/notes/2025/04#jay-bhattacharya-on-autism-research-plans. Accessed 22 Apr. 2025.
---. "RFK Jr.'s Autism Study to Amass Medical Records of Many Americans." Cbsnews.com, CBS News, 21 Apr. 2025, www.cbsnews.com/news/rfk-jr-autism-study-medical-records/. Accessed 22 Apr. 2025.
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