The goal is to help every family who has a child diagnosed with autism spectrum disorder (ASD).
ASD is a spectrum of neurologic disorders associated with developmental delay and significant social, communication and behavioral challenges. According to estimates from the U.S. Centers for Disease Control and Prevention, one in 59 children in the United States have a diagnosis of ASD by age 8, with boys four times as likely to be diagnosed as girls.
“The Hartwell Foundation seeks to inspire innovation and achievement in all programs that it supports,” said Foundation President Fred Dombrose. “We believe the opportunity to partner with ICARE will really make a difference for families affected by ASD.”
By using a confidential survey directed to parents and families of children with autism, Kids First seeks detailed information on affected children that can be used to identify common and unique characteristics of ASD.
The Kids First partnership with ICARE will be conducted using Institutional Review Board-approved, confidential web-based survey methodology developed with Stanford University, in Palo Alto, California.
Survey questions are simple, focused on basic behavioral and medical information and can be completed in about 15 minutes. Survey results will be shared confidentially with each participant, allowing them to recognize individual similarities or differences in responses.
Enrolling parents and caregivers
Enrolling parents and caregivers of children with ASD in the Kids First data registry will provide an opportunity for researchers to begin the essential first steps of sorting and organizing the characteristics of ASD. As categories are identified, it is expected the effort will expand to more sophisticated requests for information that, combined with other data—such as genomic information—will facilitate a detailed classification of ASD.
“Achieving a detailed categorization of ASD will provide specificity to interpret the autism spectrum, which should ultimately enable families, physicians and service-providers to enact personalized, targeted approaches for care and interventions that will be more successful,” said Anastasia Dimitropoulos, principal investigator of the ICARE team and associate professor in the Department of Psychological Sciences at Case Western Reserve.
ICARE is a Case Western Reserve-based consortium of researchers and clinicians—including Cleveland Clinic, University Hospitals Cleveland Medical Center and MetroHealth Medical Center and their community clinics. ICARE researchers collaborate to study ASD risk factors, underlying biological mechanisms, brain imaging and function, diagnosis, treatment and prevention.
“The Kids First-ICARE partnership will seek to acquire sufficient data to ultimately identify gaps in special-needs care, which might be adjusted to improve the lives of affected children and provide a benefit to their families.,” said Dennis Wall, lead researcher for The Hartwell Foundation and associate professor of pediatrics, psychiatry and biomedical data sciences at Stanford University Medical School. “It is hoped that such data will also provide new insights into what it means to see improvement or regression in the disorder.”
Diagnosing ASD can be difficult, since there is no medical exam, like a blood test, to identify the disorder. Instead, doctors must analyze a child’s behavior and development to decide. While research shows that early intervention can improve a child’s development, there is no known cure for ASD.
“Our continuing partnership with The Hartwell Foundation through KidsFirst will be a step forward in ICARE’s research in behavior in ASD as a necessary complement to genetics and neuroscience,” said Lynn Singer, a professor of population and quantitative health sciences, pediatrics, psychiatry and psychology at the School of Medicine and chair of the ICARE steering committee.
For more information about the ICARE Kids First Research Registry, contact Dimitropoulos at 216.368.0112 or firstname.lastname@example.org.