Editor's note: This story was updated on May 7, 2025, to reflect that the National Institutes of Health and the U.S. Centers for Medicare and Medicaid Services announced a partnership on that day using federal health insurance data to research the "root causes of autism spectrum disorder (ASD)."
A few months into U.S. President Donald Trump's second term, social media users began spreading a rumor that U.S. Department of Health and Human Services Secretary Robert F. Kennedy Jr. planned to launch an "autism registry" to track Americans with the condition.
Discussion about the alleged plan spread widely on platforms like X, Facebook, Reddit and YouTube, sparking fear among many. News outlets, including MSNBC, The Guardian and Rolling Stone, also reported on the purported registry. A Change.org petition to "stop the national autism registry" received nearly 50,000 signatures.
"These efforts are not about tracking individuals. All NIH-managed databases follow the highest standards of security and privacy, with the protection of personal health information as a top priority," the statement said.
Kennedy has described plans, in conjunction with NIH, to study "environmental factors" of autism (see video of his comments here, at 19:18 and 27:45), which align with NIH's news release on its new data platform.
(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.)
A timeline of contradictory statements and announcements
The "autism registry" rumor started after CBS News reported on April 22, 2025, that the National Institutes of Health (NIH), which HHS oversees, planned to launch "a new disease registry" to "track Americans with autism." Snopes verified that CBS News' story accurately reported on an NIH meeting in which the director of the agency, Jay Bhattacharya, said NIH would be creating a new "national disease registry," including for autism, as an apparent part of Kennedy's plans to study the "environmental factors" of autism.
But following Bhattacharya's comments, health publication STAT News reported that an HHS official walked back Bhattacharya's comments, saying that the federal health department will not be creating an "autism registry." Snopes also independently verified STAT News' reporting.
Then, on May 7, 2025, the NIH announced a partnership with the government's health insurance agency, allowing researchers to access data on Medicare and Medicaid enrollees with autism. (Medicaid covers low-income adults and children through a state and federal partnership; Medicare covers older adults and younger people with disabilities through the federal government.) Here is how the news release described the program and addressed concerns about privacy (emphasis ours):
This partnership will focus first on enabling research around the root causes of autism spectrum disorder (ASD). In the long term, the partnership will link real-world data, in a manner consistent with applicable privacy laws to protect Americans' sensitive health information, for research on chronic conditions—a core priority of President Trump and the Department of Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr.
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CMS and NIH will start this partnership by establishing a data use agreement under CMS' Research Data Disclosure Program focused on Medicare and Medicaid enrollees with a diagnosis of ASD. Using ASD 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. This pilot research program will inform continued development of a landmark NIH platform to ultimately be used by researchers in understanding healthcare utilization, chronic disease etiology and treatment, and the economic burden of chronic conditions.
The CMS Research Data Disclosure Program "makes data files available to certain stakeholders aas allowed by federal laws and regulations as well as CMS policy," according to the agency's webpage. CMS maintains non-identifiable data sets, data files identifiable to people and data sets which share only some personal information.
NIH's April statement said that its new platform will include "large-scale, de-identified data."
We also reached out to HHS for more information on the program and will update this story if the agency responds.
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. However, participation in these registries is voluntary and outside groups run the registries.
Read health officials' initial statements on the 'autism registry'
As first reported by CBS News, Bhattacharya announced during an April 21, 2025, meeting open to the public that the NIH will be "developing national disease registries, including a new one for autism" (see 2:01:50).
These "national disease registries," according to Bhattacharya, will be part of a comprehensive data platform to study autism, which the director said NIH will be launching for its initiative to study autism "requested by the president of the United States to Secretary Kennedy" (see 1:55:17).
Bhattacharya said the data would pull from private sources, such as electronic health records, pharmacy data, and even wearable fitness trackers — but the data platform will still "preserve the privacy of patients" through "state of the art protections" (see 2:01:00 and 2:02:32).
But on April 24, 2025, STAT News reported that the "federal health department is not creating a new registry of Americans with autism, a Department of Health and Human Services official said in a written statement." The same reporter who first broke the CBS News story on the registry, Alexander Tin, reported the next day that CBS News obtained a similar statement:
"We are not creating an autism registry. The real-world data platform will link existing datasets to support research into causes of autism and insights into improved treatment strategies," an official for the department told CBS News in an emailed statement.
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The HHS official did not say whether Bhattacharya initially misspoke or explain why his plan was reversed. Bhattacharya did not respond to a request for comment. HHS has not responded to a CBS News request for an interview with Bhattacharya about the registry.
Tin sent the same statement to Snopes via email upon request, but could not forward the original email for verification purposes as the HHS official asked to remain unnamed. However, STAT News reporter O. Rose Broderick forwarded the email from HHS to Snopes, which confirmed that she did, indeed, receive the same statement, word-for-word, as reported by CBS News. Thus, it is demonstrably true that HHS contradicted Bhattacharya's initial comments regarding the creation of an autism registry.
As of this writing, it is unclear whether Kennedy wants to launch a full-scale autism registry tracking all Americans with autism, but health officials in the Trump administration did announce that it would collect data on federal health insurance enrollees with autism diagnoses.