The Trump administration has revealed plans to create a data bank focused on researching autism spectrum disorder (ASD) using medical records, insurance claims, and consumer wearables. The U.S. Centers for Medicare & Medicaid Services (CMS) announced a partnership with the National Institutes of Health (NIH) to build a first-of-its-kind data platform dedicated to ASD research.
Concerns and Reactions
The announcement has sparked concern among autism-community stakeholders, with some viewing it as a national autism registry that could compromise privacy. Krista Boe, chief clinical and compliance officer for Acorn Health, expressed concerns about parents canceling scheduled assessment and diagnostic appointments for their children due to privacy fears.
Data Collection and Research Focus
The CMS and NIH will collect data in a manner consistent with applicable privacy laws. The research will focus on autism diagnosis trends, health outcomes from specific medical and behavioral interventions, access to care, and disparities by demographics and geography. The timeline for the data platform’s launch remains unclear.
Expert Insights
Jim Spink, CEO of Autism Care Partners, noted that while the data registry could advance the understanding of autism incidence and treatment patterns, it is crucial to recognize the limitations of claims information. He emphasized the need to complement claims data with non-claims sources to have a holistic view of the patient and family experience.
Prevalence and Research
The most recently released federal data suggests a national prevalence rate of autism of 32.2 per 1,000 among eight-year-old children. Experts stress the importance of ensuring funding for research and treatment while maintaining inclusive, respectful dialogue and evidence-based research.
As the project moves forward, stakeholders hope that the government and autism-community stakeholders will work together to ensure that the focus remains on advancing understanding and support for the autistic community.
