Editor's note: This story has been updated multiple times, first on April 25, 2025, then again on May 7, 2025, to address new developments, including contradicting statements from health officials and the launch of a database using information from certain health insurance enrollees.
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. (HHS oversees NIH.)
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.
Snopes confirmed that CBS News 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, in conjunction with NIH, to study "environmental factors" of autism (see video of his comments here, at 19:18 and 27:45).
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 was able to independently verify STAT News' reporting. Given the contradictory statements, we cannot provide a truth rating as to the claim that Kennedy plans to launch this registry.
We reached out to HHS for further clarification and will update this story if the agency responds. It is true, however, that NIH plans to use data collected from federal health insurance enrollees with autism for research purposes. In a statement sent via email, NIH said that its autism initiative "includes the development of a secure data repository that will enable researchers to analyze large-scale, de-identified data to better understand the causes of conditions like autism and chronic diseases."
"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 NIH statement continued.
(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.)
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.
NIH announces database, not full registry
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.
Read health officials' contradicting 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.