Is Robert F. Kennedy Jr. Actually Creating an Autism Registry — and Is It Mandatory?
The NIH is collecting patient health records for a so-called autism study.
Published April 23 2025, 1:33 p.m. ET
U.S. Department of Health and Human Services (HHS) Secretary Robert F. Kennedy Jr. sparks controversy with each successive political move and astoundingly offensive and uneducated public comments. The Trump Administration's wildly inappropriate views on individuals with autism are tone deaf at their most generous, and flat-out wrong in every way, as exemplified by countless wonderful people with autism.
Is an alleged registry of autistic individuals forthcoming, and if so, will it be mandatory?
Below, we report on what Kennedy has said about individuals with autism and whether he has explicitly stated that a mandatory registry for individuals with autism is impending.
Here's what you should know about this troubling news.
Is RFK's autism registry mandatory?
On April 11, the BBC reported that Kennedy announced his intent to corral "hundreds of scientists from around the world" who will undertake a "massive testing and research" mission to confirm the cause of autism by September 2025.
Soon after, on April 22, The Guardian reported that the National Institutes of Health began collecting Americans' private medical records and a comprehensive degree of patient data to provide to these scientific researchers in support of the study.
In this sense, as MSNBC clarifies, this disease registry with Americans' private medical records is also being referred to as an "autism registry" which will only serve to "advance [Kennedy's] conspiratorial and harmful health agenda."
Alternatively, as Science reports, NIH Director Jayanta “Jay” Bhattacharya called the database a “real-world data initiative.”
It is unclear if patients have any autonomy in terms of the ability to opt out of having their data stolen by RFK and his NIH teams.
It does not appear this would even be possible, as PEOPLE reported the data is being sourced from a slew of varied sources, including: "pharmacy chains, lab tests, genomics data from patients treated by the Department of Veterans Affairs and Indian Health Service, claims from private insurers, data from smartwatches and fitness trackers, and more."
It is important to remember that RFK believes that vaccinations cause autism. This is a viewpoint that was catalyzed by a former doctor named Andrew Wakefield in a paper that has since been retracted and refuted due to unscientific procedures and claims.
Are all the U.S. states required to participate in the Autism registry?
Regarding RFK's suspicious collection of patient health records, it is reported only in broad terms that the NIH is sourcing data from individuals throughout the U.S.
At this time, it does not appear that any states are being excluded or considered exempt from this mass data collection endeavor.
It should also be noted that there is an existing National Database for Autism Research (NDAR), which was launched in 2006. The NDAR is a repository of information through which five NIH entities contributed research and data.
Suspiciously, the NDAR website now redirects to the general National Institute of Mental Health Data Archive webpage, and several other NDAR links are now either broken on redirect elsewhere.