Federal officials are rolling out a major new research effort to “transform” autism diagnosis and care.
The program known as Systems for Phenotypic Evaluation, Clinical Trajectories, Response, and Agency, or SPECTRA, will bring together “biological, clinical, behavioral, and real-world data with advanced computational tools,” the U.S. Department of Health and Human Services said.
The idea is to enable earlier and more accurate diagnosis and a better understanding of what influences each person’s health and development in order to establish more individualized approaches to care.
Advertisement – Continue Reading Below
“Autism is not one-size-fits-all, and our science and care cannot be either,” said HHS Secretary Robert F. Kennedy, Jr. “Millions of American families are impacted by autism, and they need better answers about why it presents so differently from one person to another and which approaches can best meet each person’s needs.”
The plan is for SPECTRA to integrate genetics and other biological data to establish a system to identify autism risk factors and match people to appropriate interventions while speeding up research on new therapies.
HHS did not disclose how much it plans to spend on the new initiative, but said it will start the process of accepting proposals next month. SPECTRA will be managed by HHS’ Advanced Research Projects Agency for Health known as ARPA-H.
As HHS secretary, Kennedy has focused heavily on autism, overhauling a key government advisory panel, opening the door to research on a long-discredited association with vaccines and making claims linking Tylenol to the developmental disability, moves that have been widely criticized by researchers in the field.
Despite this, autism researchers said the National Institutes of Health’s $50 million Autism Data Science Initiative, which was announced last year, represented a step in the right direction.
SPECTRA is receiving a similarly warm reception.
“This ARPA-H initiative offers exciting opportunities to the autism research community. Harnessing new technologies to address a range of core clinical issues has the potential to transform the delivery of diagnostic, evaluation and intervention services,” said Helen Tager-Flusberg, director of the Center for Autism Research Excellence at Boston University, who is leading the Coalition of Autism Scientists, a group of more than 300 researchers in the field. “The ARPA-H approach to research funding is radically different from NIH but we should be optimistic that SPECTRA will be able to deliver innovative solutions in a timely way. The key to its success will be that funded projects build on the scientific foundation established over the past decades.”
Dr. Andy Shih, chief science officer at Autism Speaks, noted that ARPA-H has committed to working with people with autism and their families and protecting data.
“That’s the right foundation for work like this,” he said. “Bringing together advances in autism research, data science and technology is a direction worth pursuing, especially if what we learn translates into practical tools that improve quality of life for the autistic community.”
