The Trump administration has launched a collaboration between the National Institutes of Health (NIH) and the Centers for Medicare and Medicaid Services (CMS) to investigate the causes of autism spectrum disorder. This partnership will utilize claims data, electronic medical records, and consumer wearables to gain a deeper understanding of autism. Health and Human Services Secretary Robert F. Kennedy Jr. spearheads the initiative, despite controversy surrounding his views on vaccines and autism—a theory refuted by the Centers for Disease Control and Prevention (CDC).
The research aims to examine trends in diagnoses, evaluate intervention effectiveness, explore disparities in access to care, and review the economic impact on families and the healthcare system. Recently, CMS’s Research Data Disclosure Program, which includes data from a 2016 study of 846,350 autistic Medicaid enrollees, took center stage in this initiative. NIH Director Jay Bhattacharya highlights the potential of integrating CMS claims data with NIH’s secure data platform to yield groundbreaking insights and improve health outcomes.
While the initiative is welcomed by many for its promise of transparency, accountability, and long-awaited answers for families, it has received mixed reactions from different stakeholders. This project aspires to deliver a clearer picture of autism, offering hope for a more informed future in autism research and care.
