scale data acquisition includes records from pharmacy chains, lab testing, genomics, private insurance claims, and even data from smartwatches and fitness trackers.
Officials plan to integrate information from government sources like the Department of Veterans Affairs and Indian Health Service, and are seeking broader agreements with the Centers for Medicare and Medicaid Services. The goal is to provide external researchers chosen for Kennedy's studies with comprehensive patient data covering a wide portion of the U.S. population, according to NIH Director Dr. Jay Bhattacharya.
A significant part of the new effort involves launching a disease registry intended to track Americans diagnosed with autism. This new AUTISM REGISTRY will feed into the large data platform being assembled.
The initiative comes amidst controversy surrounding Secretary Kennedy's recent public remarks. Speaking after the CDC released data showing rising autism prevalence rates, Kennedy described life with the disability in grim terms and insisted autism is "preventable."
These comments about ASD drew swift pushback from autism advocates and organizations. Groups representing individuals on the SPECTRUM voiced deep concern, stating Kennedy's framing perpetuates stigma and is not supported by scientific consensus.
A joint statement from several prominent organizations emphasized that people with autism deserve respect and support, and that policy should rest on evidence. Some advocates interpret Kennedy's comments and proposed budget cuts as actively harming the autistic community, as detailed in a plain language roundup from one group.
Despite the backlash, Kennedy and NIH officials maintain the data initiative and registry will enable research ranging from basic science to epidemiological studies to identify potential causes and improve management strategies. They note that the research will carefully account for the wide range of ways autism affects people.
While researchers will access data on a secure platform, the NIH promises safeguards to protect confidentiality, stating data cannot be downloaded directly. The effort aims to eventually provide a robust platform for chronic disease research beyond autism.
Kennedy has clarified some of his earlier remarks. On one occasion, he suggested via a post on X that identifying exposures causing what he calls an "epidemic" could lead to compensation for families. He later stated he was referring specifically to individuals who are nonverbal when describing limited outcomes.
