In order to speed up research and to advance the understanding of autism, the Vanderbilt Kennedy Center Treatment and Research Institute for Autism Spectrum Disorders (TRIAD) begins its second year of recruitment for the SPARK national project.
In collaboration with 20 of the nation’s leading medical schools and autism research centers, TRIAD is offering SPARK, a free online study sponsored by the Simons Foundation Research Initiative (SFARI), to Tennessee and beyond. It aims to be the largest study of its kind by building a community of 50,000 individuals with autism and their families across the United States.
The objective is to help facilitate research that has not yet been possible. Participation in SPARK enables a prestigious community of principal investigators access to a variety of DNA samples that will ultimately expand the understanding of the role of specific genes in the development of autism.
In the first year of SPARK, the Simons Foundation set clinical site-specific recruitment goals. TRIAD was required to achieve 107 completed trios. A trio consists of the successful participation of both biological parents and their child with autism. TRIAD not only achieved this goal 37 days prior to deadline but also recruited numerous additional trios, leading to a monetary incentive award from Simons and a guaranteed second year of funding. In the second year of the SPARK project, clinical sites are required to recruit 200 trios each.
“SPARK is exciting because it involves people who want to be part of a path toward progress,” said Sarah Carpenter, TRIAD Outreach Coordinator. “Families tell me that they hope the study helps all of us discover more about what causes autism and how we can better help those with it. Their hope inspires my work. We started recruiting for SPARK in April 2016, and as a clinical network we’ve enrolled about 23,000 individuals with ASD. That’s impressive, but we’ll be pushing hard to achieve the 50,000 milestone in our second year.”
In addition to the potential for discovery, funding from SPARK enables TRIAD to provide free programs and services to the community. “Families First is a great example of this. It’s a series of impactful workshops created and led by our team for parents of young children newly diagnosed with autism,” Carpenter said.
Feedback provided by families about SPARK reveals their excitement about the project. “They remark on how quick and easy the registration and saliva collection processes are,” said Carpenter.
Participants register online at www.sparkforautism.org/vu. The whole family can take part, including the child with autism, a biological sibling, their parents (biological and adoptive), and/or a legal guardian. Once a family completes registration, a saliva collection kit arrives in the mail about 3 weeks later. From there, everybody who registered spits.
“If a child has difficulty spitting, or just doesn’t want to, there’s a cheek sponge in the kit for collection. Some parents have told me that they collect the spit while their baby is napping,” said Carpenter. “Once the family is finished spitting, they stick the provided prepaid label on the box all their stuff came in and drop it in the mail.”
The saliva samples are then sent to a secure laboratory where they undergo a quality check and are prepped for DNA extraction.
Compensation for participation is valued at up to $50. Participants also gain access to updates on the latest autism research and access to experts who will arm them with information to help address daily situations. Participants could also potentially receive results from the analysis of their family’s DNA, in the event that they opted during registration to receive this information and a genetic cause for autism is identified.
“Nothing like this has been attempted on this scale to date,” said Zachary Warren, Ph.D., TRIAD executive director and associate professor of Pediatrics, Psychiatry & Behavioral Sciences, and Special Education. “It’s an exciting opportunity to dramatically advance the pace of discovery regarding the causes and potentially novel treatments for autism. We will be able to leverage Vanderbilt’s strong patient and community partnerships to advance discoveries around autism. In turn, the SPARK study will be able to support family and community training and support activities that are desperately needed.”
Courtney Taylor is VKC associate director of Communications and Dissemination.