HHS launches autism research program to individualize care

The Department of Health and Human Services’ Advanced Research Projects Agency for Health (ARPA-H) announced Sept. 17 that it has launched a research program to improve autism diagnosis and care.

The Systems for Phenotypic Evaluation, Clinical Trajectories, Response, and Agency program (SPECTRA) will combine biological, clinical, behavioral, and real-world data with computational tools to support earlier and more accurate diagnosis, identify factors that influence health and developmental outcomes, and develop care tailored to individual needs.

“Autism is not one-size-fits-all, and our science and care cannot be either,” HHS Secretary Robert F. Kennedy Jr. said.

HHS said one in 31 8-year-olds in the U.S. has been identified with autism spectrum disorder. Autism can involve widely varying needs and abilities and is often associated with sleep disorders, gastrointestinal problems, intellectual disability, and behavioral crises.

The agency said autistic people have shorter lifespans on average and face higher risks of some neurological conditions, including dementia and Parkinson’s disease. HHS also cited an analysis that projected annual U.S. autism-related costs of about $461 billion by 2025, including medical care, support services, and lost productivity.

Recognition of autism and its various presentations has improved over the past decade, according to SPECTRA program manager Russell Shilling, but assessment and care approaches have not kept pace.

“They overlook the behavioral and biological complexity of each person,” Shilling said. “SPECTRA is designed around that complexity.”

HHS said SPECTRA will combine advanced health technologies, computational tools, and input from the autism community to better understand individual needs and develop technologies intended to improve communication, daily functioning, and well-being.

The agency said early screening and care during key developmental periods can benefit autistic children, but most assessments still occur after developmental differences appear, and late diagnosis remains common. Current diagnosis also relies heavily on time-intensive behavioral observation by trained professionals who may not be readily available in some areas.

SPECTRA will seek to securely integrate biological data including genetic factors, environmental exposures, epigenetic features, microbiome biology and other “omics” data. Researchers will use those data to develop computational models of autism subtypes and trajectories.

The goal is an end-to-end system that can identify risk factors, help match individuals with interventions, and accelerate research into adaptive therapies.

ARPA-H is seeking proposals in four areas:

• Analysis: Identifying genetic, environmental, family, metabolic, immune, and developmental factors associated with different health, communication, and functional outcomes.
• Modeling: Developing federated, privacy-preserving AI platforms that map trajectories and identify potentially modifiable factors and treatment targets.
• Precision Intervention: Selecting and testing individualized interventions across the lifespan.
• Enabling Technologies: Developing accessible tools for communication, quality of life, and real-world assessment through everyday use.

ARPA-H said it is working with advocacy groups and other stakeholders and has published additional information about the program and its solicitation. The program could also have implications for Catholic schools, health systems, and disability ministries since ARPA-H says it wants resulting tools to be usable in medical, school, home, and community settings.