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April 21, 2016
CHAPEL HILL, NC – The University of North Carolina at Chapel Hill today helped launch SPARK, a research initiative designed to become the largest genetic research study for autism ever undertaken in the United States. The nationwide project will collect information and DNA from 50,000 individuals with autism — and their families — to better understand the causes of this condition and help usher in an era for personalized medicine and targeted treatment for people on the autism spectrum.
SPARK, sponsored by the Simons Foundation Autism Research Initiative (SFARI), is led locally by Joseph Piven, MD, and Gabriel Dichter, PhD, and their team at UNC-Chapel Hill, which is one of 21 leading research institutions across the country chosen by SFARI to assist with recruitment.
“The initiative sets in motion an era of personalized medicine for every person with this condition,” said Piven, director of the Carolina Institute of Developmental Disorders (CIDD) and the Thomas E. Castelloe Distinguished Professor of Psychiatry, Pediatrics and Psychology. “It not only aims to collect an enormous amount of genomic data, but to use that data to guide targeted-treatment research based on a patient’s genetic analysis. It’s truly a historic moment in this field and provides our team with an unprecedented resource that could help thousands of families in North Carolina and beyond.”
Piven and Dichter are no strangers to this kind of work. For more than 15 years, they have been building a research registry of families with at least one child with autism. This registry is a partnership between the CIDD, the NICHD-funded Intellectual and Developmental Disabilities Research Center, and the UNC TEACCH Program. Participants are enrolled across the seven statewide TEACCH clinics that provide services to individuals with autism and their families. These North Carolina families – now more than 6,000 strong – have made it possible for UNC researchers to deepen their understanding of this complex condition and provide numerous intervention strategies, support systems, and diagnostic tools. Piven and Dichter’s team will now tap into that registry to recruit these families, while also working to find other families interested in partaking in this historic endeavor.
Potential participants can find more information at the UNC SPARK website.
To date, approximately 50 genes have been identified that almost certainly play a role in autism, and scientists estimate that an additional 300 or more are involved. By studying these genes, their biological consequences, and how they interact with environmental factors, researchers can better understand the condition’s causes, and link possible underlying causes to the spectrum of symptoms, skills, and challenges of those affected.
“No two children with autism are the same, but the way we try to help kids now is with a one-size-fits-all approach and then see what works best,” said Dichter, associate professor of psychiatry and psychology at UNC-Chapel Hill. “The SPARK initiative offers the first opportunity to understand autism genetics in a way that will allow us, in the future, to match a person’s specific genetic profile with a specific treatment plan. That is the ultimate goal of this project and we are indebted to the Simons Foundation and SFARI for making it possible.”
SPARK aims to speed up autism research by inviting participation from this large, diverse autism community, with the goal of including individuals with a professional diagnosis of autism of both sexes and all ages, backgrounds, races, geographic locations, and socioeconomic situations. The initiative will lead to large-scale access to study participants whose DNA may be selectively analyzed for a specific scientific question of interest.
SPARK will also solicit feedback from individuals and parents of children with autism to develop a robust research agenda that is meaningful for them.
The UNC Neuroscience Center has also joined UNC SPARK to fund a full-time staff person and undergraduates dedicated to community outreach.
SPARK (Simons Foundation Powering Autism Research for Knowledge) is a national autism research initiative that will connect individuals with a professional diagnosis of autism and their biological family members to research opportunities to advance our understanding of autism. SPARK’s goal in doing so is not only to better understand autism, but to accelerate the development of new treatments and supports.
SPARK was designed to be easily accessible to the entire autism community and was fashioned with input from adults with autism, parents, researchers, clinicians, service providers, and advocates.
Registering for this first-of-its-kind initiative can be done entirely online in one’s home and at no cost. DNA will be collected via saliva kits shipped directly to participants. Once the SPARK participant’s family has returned their saliva samples and provided some medical and family history information, the SPARK participant will receive a $50 gift card. SPARK will provide access to online resources and the latest research in autism, which may provide participants and families with valuable information to help address daily challenges.
For researchers, SPARK provides a large, well-characterized cohort of genetic, medical and behavioral data, and will result in cost-savings for researchers by reducing start-up costs for individual studies.
SPARK is entirely funded by the Simons Foundation Autism Research Initiative (SFARI).
The University of North Carolina School of Medicine is known around the world for outstanding research, training, and clinical services for individuals with developmental disabilities and their families. Recruitment of North Carolina families to participate in SPARK will be accomplished through a collaboration between the Carolina Institute for Developmental Disabilities (CIDD) and the UNC TEACCH Autism Program. The CIDD’s overarching aim is to be a comprehensive program for interdisciplinary clinical services, basic to applied research, and clinical and basic research training on the full range of neurodevelopmental disorders. The UNC TEACCH Autism Program offers clinical services through seven clinics around the state as well as clinical training, residential care, and supported employment for individuals with autism across the lifespan.
Autism is a general term used to describe a group of complex developmental disorders – autism spectrum disorders – caused by a combination of genes and perhaps environmental influences. These disorders are characterized by deficits in social communication (both verbal and non-verbal) and the presence of repetitive behaviors or restrictive interests. An estimated one in 68 children in the U.S. is on the autism spectrum. The wide range of autism manifestations makes it challenging to study potential causes or treatments, and thus a large cohort, which can be segmented, can substantially advance such efforts.