Groundbreaking initiative combines web-based registry with DNA analysis to accelerate autism research and discovery of treatments and supports
April 21st, 2016
COLUMBIA, Mo. – University of Missouri’s Thompson Center for Autism and Neurodevelopmental Disorders, today helped launch Simons Foundation Powering Autism Research for Knowledge (SPARK), an online research initiative designed to become the largest autism study ever undertaken in the United States. Sponsored by the Simons Foundation Autism Research Initiative (SFARI), SPARK will collect information and DNA for genetic analysis from 50,000 individuals with autism — and their families — to advance scientists’ understanding of the causes of this condition and hasten the discovery of supports and treatments.
The Thompson Center is one of a select group of 21 leading national research institutions chosen by SFARI to assist with recruitment. The SPARK effort is being led locally by Thompson Center Executive Director Stephen Kanne and his team at MU.
“The Thompson Center was one of three sites to pilot the study beginning in December 2015,” Kanne said. “We earned recognition as a model site for the Simons Simplex Collection in 2007 – the largest genetic family study of autism to date – and due to the high caliber of our work, we have continued to partner with the Simons Foundation’s autism research arm ever since. We were honored to be selected to pilot this study for the last six months in preparation for this national launch.”
Autism is known to have a strong genetic component. 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, associated biological mechanisms and how genetics interact with environmental factors, researchers can better understand the condition’s causes, and link them to the spectrum of symptoms, skills and challenges of those affected.
“SPARK empowers researchers to make new discoveries that will ultimately lead to the development of new supports and treatments to improve lives,” said Kanne. “This makes it one of the most insightful research endeavors to date, in addition to being the largest genetic research initiative in the U.S.”
SPARK aims to assist autism research by inviting participation from a 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.
SPARK will connect participants to researchers, offering them the unique opportunity to impact the future of autism research by joining any of the multiple studies offered through SPARK. The initiative will catalyze research by creating large-scale access to study participants whose DNA may be selectively analyzed for a specific scientific question of interest. SPARK also will elicit feedback from individuals and parents of children with autism to develop a robust research agenda that is meaningful for them.
Anyone interested in learning more about SPARK or in participating can visit www.SPARKforAutism.org/MUTC, or call Amanda Shocklee at 573-884-6092.
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 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).
About the Thompson Center
The Thompson Center for Autism and Neurodevelopmental Disorders at the University of Missouri is a national leader in confronting the challenges of autism and other developmental conditions through its collaborative research, training and service programs. The mission of the Thompson Center is to improve the lives of individuals and families affected by autism and neurodevelopmental disorders through world class programs that integrate research, clinical service delivery, education and public policy.
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.