Special to UM News
CORAL GABLES, Fla. (April 21, 2016) – Researchers from the University of Miami-Nova Southeastern University Center for Autism and Related Disabilities (UM-NSU CARD) in UM’s Department of Psychology just helped launch the Simons Foundation Powering Autism Research for Knowledge, or 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, for the Simons Foundation Powering Autism Research for Knowledge, will collect information and DNA for genetic analysis from 50,000 individuals with autism—and from their families—to advance our understanding of the causes of this condition and to hasten the discovery of supports and treatments.
UM-NSU CARD is one of a select group of 21 leading national research institutions chosen by SFARI to assist with recruitment. Melissa Hale, clinical assistant professor, and her colleagues in the College of Arts and Sciences, Anibal Gutierrez and Michael Alessandri, executive director of UM-NSU CARD, are leading the SPARK effort locally.
UM-NSU CARD is a state-funded resource and support program dedicated to improving the lives of individuals with autism and related disabilities, including deaf-blindness and pervasive developmental disorders.
“SPARK empowers researchers to make new discoveries that will ultimately lead to the development of new supports and treatments to improve lives, which makes it one of the most insightful research endeavors to date, in addition to being the largest genetic research initiative in the U.S.,” Hale says.
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 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 and 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 SPARKforAutism.org/card, or e-mail SPARK@psy.miami.edu.
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 the convenience of 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).