JFK Partners at the CU Anschutz Medical Campus in Aurora, CO recently helped launch 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 our understanding of the causes of this condition and to hasten the discovery of supports and treatments.
JFK Partners is one of 21 leading national research institutions chosen by SFARI to assist with recruitment. The SPARK effort is being led locally by Susan Hepburn, PhD, associate professor at CU School of Medicine and director of research at JFK Partners; Sandra Friedman, MD, MPH, professor of pediatrics, director of JFK Partners, and section head of developmental pediatrics at Children's Hospital Colorado; and Cordelia Robinson Rosenberg, PhD, RN, professor of pediatrics and psychiatry.
"SPARK empowers researchers to make new discoveries that ultimately will 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.," says Dr. Hepburn.
"We have seen a significant increase in children diagnosed with autism spectrum disorder (ASD)," says Dr. Friedman. "We have over 6,000 patient visits in the Developmental Pediatrics' clinical program at Children's Hospital Colorado, many of which include diagnostic and medical assessments, follow-up, and different types of treatment for children with ASD. This project provides us with additional opportunity to improve our understanding of the genetics of this disorder and ultimately improve the lives of individuals with ASD and their families."
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 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.
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).
About JFK Partners
JFK Partners is an interdepartmental program of the departments of Pediatrics and Psychiatry of the University of Colorado School of Medicine located at the Anschutz Medical Campus in Aurora, Colorado. Designated as Colorado's University Center of Excellence in Developmental Disabilities (UCEDD) and Leadership Education in Neurodevelopmental Disabilities (LEND) Program, JFK Partners has collaborative relationships with numerous organizations that are a part of Colorado's developmental disability and special health care needs communities.
The mission of JFK Partners is to promote the independence, inclusion, contribution, health, and well-being of people with developmental disabilities and special health care needs and their families through consumer, community, and university partnerships. At the core of this mission is a commitment to family and person-centered, community-based, and culturally competent programs and services. This mission is accomplished through the pursuit of excellence in education and training, consultation, technical assistance, direct service, research, program development, policy analysis, and advocacy.
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.
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Children's Hospital Colorado