The National Institutes of Health (NIH) and the Centers for Medicare & Medicaid Services (CMS) are partnering to develop a real-world data platform in the US that some observers say amounts to a registry for individuals with autism spectrum disorder (ASD).
According to the HHS announcement, the initiative鈥檚 pilot phase will first centre on Medicare and Medicaid enrollees with a diagnosis of ASD, with teams at the CMS and NIH to establish a 鈥渟ecure tech-enabled mechanism鈥� to ensure the privacy and secure compliance of the data exchange.
Discover B2B Marketing That Performs
Combine business intelligence and editorial excellence to reach engaged professionals across 36 leading media platforms.
The HHS announcement stated that the intended outcome is to create an NIH platform that researchers can ultimately use to gain insight into 鈥渉ealthcare utilisation, chronic disease aetiology and treatment, and the economic burden of chronic conditions鈥�.
US Health Secretary Robert F Kennedy, Jr (RFK Jr) commented: 鈥淲e鈥檙e using this partnership to uncover the root causes of autism and other chronic diseases.
鈥淲e鈥檙e pulling back the curtain鈥攚ith full transparency and accountability鈥攖o deliver the honest answers families have waited far too long to hear.鈥�
Despite RFK Jr鈥檚 buoyant tone around finding the 鈥榬oot cause鈥� of autism, his plans have been met with consternation by those in the autism community.
US Tariffs are shifting - will you react or anticipate?
Don鈥檛 let policy changes catch you off guard. Stay proactive with real-time data and expert analysis.
By GlobalDataLast month, the HHS announced and then after they were met with widespread condemnation. Nonetheless, on 6 May, RFK Jr appeared on , and appeared to endorse the supposedly nixed autism registry plans.
On the show, RFK Jr said: 鈥淓very other disease like this has a registry so that 鈥� and it鈥檚 voluntary 鈥損ublic health officials can monitor the numbers.
鈥淚t鈥檚 not private information, it鈥檚 not information that is gonna [sic] go out to other agencies, it鈥檚 a voluntary system where your privacy is protected.
鈥淛ust a system for keeping track of a disease that is now becoming debilitating to the American public.鈥�
The Autism Self Advocacy Network nonprofit stated: 鈥淕iven this administration鈥檚 previous actions and comments, particularly those related to autism over the last several weeks, we are not assuming that there is no longer anything to worry about.
鈥淲e will continue to monitor this research initiative and any other autism-related administration efforts with extreme vigilance.鈥�
For years, RFK Jr has shared the At what was intended to be an introduction to the new HHS secretary, RFK Jr gave a speech at the US Food and Drug Administration (FDA) last month that he used to push a range of conspiracy theories, cast doubt over autism and, in a reference to the database project, claimed 鈥渨e will know鈥� the cause of the 鈥渁utism epidemic by September鈥�.
A petition on Change.org, which has currently garnered almost 50,000 signatures, points out that any such plans for a registry comprising a list of autistic individuals to be tracked, labelled, and filed under the guise of public health “鈥�.
Whether or not the worst parts of the HHS鈥檚 plans are initiated, Dr Helen Tager-Flusberg, director of the center for Autism Research Excellence at Boston University, points out the flaw in the HHS’s plans to allow researchers to use the new platform to access data on autistic individuals. The metrics, she noted, including disparities by demographics and geography and the economic burden on families and healthcare systems, have 鈥�.
