The National Institutes of Health and the Centers for Medicare & Medicaid Services have partnered to enable research around the root causes of the autism spectrum disorder by creating a database of Medicare and Medicaid enrollees with a diagnosis of the condition, the agencies said on Wednesday.
The partnership will help NIH to build a real-world data platform enabling advanced research across claims data, electronic medical records, and consumer wearables.
It will first focus on research around the root causes of autism, and in the long term link real-world data for research on chronic conditions.
"We're pulling back the curtain — with full transparency and accountability — to deliver the honest answers families have waited far too long to hear," said U.S. Department of Health and Human Services Secretary Robert F. Kennedy, Jr.
Researchers will focus on autism diagnosis over time, health outcomes from medical and behavioral interventions, access to care and disparities by demographics and geography as well as the economic burden on families and healthcare systems.
Autism is a neurological and developmental condition marked by disruptions in brain-signaling that cause people to behave, communicate, interact, and learn in atypical ways.
Earlier in April, the U.S. health secretary said environmental contributors to autism are behind its rising prevalence, adding he plans to look at everything from mold to medicine to identify them.
Rates of autism spectrum disorder among U.S. children reached a record level in 2022, continuing a recent trend of increasing prevalence.
There are no treatments or cures for autism, nor can it be reversed. However, experts agree that early diagnosis is crucial. Intervention with supportive measures – ideally before age three - is critical for improving cognitive, social and communication skills.
