What is SPARK?
SPARK is a landmark national autism research project designed to facilitate research that accelerates our understanding of the causes of autism and how autism impacts all of those affected. The mission of SPARK is simple: to ignite research at an unprecedented scale to improve lives by advancing our understanding of autism.
How is MUSC involved in SPARK?
While there have been considerable advances in autism research, we recognize there is still a long way to go to gain a better understanding of the causes and potential treatments of autism and the full spectrum of symptoms, skills and challenges of those affected. Therefore, MUSC has partnered with the Simons Foundation Autism Research Initiative, in the SPARK autism research project, to gain increased understanding of the causes of autism. SPARK’s online research partnership involving 50,000 individuals with autism and their families, seeks to accelerate research and advance understanding of autism.
Why is genetic research important?
Autism is known to have a strong genetic component, but there is no singular cause of autism, and there is still so much we don’t know. In fact, genomic research only recently began to decisively associate specific genes with the disorder. Autism is not a single gene disorder – it is likely that hundreds of genes play a role in the causes of autism, and that these genes interact with environmental factors that also contribute to the causes of autism.
Scientific research requires a large sample size, or number of participants, to represent the full population. The more participants a research study has, the more confidence we have in the accuracy of any resulting findings.
One of our key goals is to enable research that has not been possible before by dramatically increasing the number and diversity of autism research participants. Share the unique information that makes you who you are and equip researchers with the information that they need to deliver treatments and scientific advances as rapidly as possible.
What does participation involve?
To join this national autism research cohort, individuals with a professional diagnosis of autism and their biological family members (both biological mom and dad are encouraged to participate, if possible) will be asked to share information about their medical and family history, as well as provide a DNA sample. Unlike other genetics autism studies, DNA will be collected and analyzed using saliva kits shipped to participants’ homes, making the process less intrusive and more convenient for families and adults on the autism spectrum.
Registration can be completed entirely online at www.SPARKforAutism.org/musc in the convenience of your home. There is no cost to join SPARK; you will never be asked to donate money as part of this project. In appreciation of your participation in SPARK, individuals with autism will receive an electronic gift card, valued up to $50, once SPARK receives the saliva samples.
How does SPARK benefit individual families?
We recognize there are a variety of reasons why individuals with autism and their families may choose to participate in genetic research – whether based on an altruistic mentality to try to help the autism community, regardless of direct benefit to themselves or their own family, or an affected individual’s search for answers, or an obligation and responsibility felt by parents to help their child in any possible way. Mentalities and attitudes to participate in research are shaped by different situations and experiences, such as the emotional and financial toll of raising a child with autism, difficulty for adults finding housing or employment, or the frustration of not having a proper diagnosis and access to educational and medical services.
Whatever the reasons are that incentivize people to participate in research, it is clear that we need to learn more. By understanding more about autism-linked genes, scientists can better understand the causes of autism, as well as ultimately develop effective treatments and better therapies for families challenged with autism. SPARK will provide support to the community of participants by presenting tips and information about autism and how to approach potential challenges in new and helpful ways.
Who can participate?
The entire autism community is invited to join SPARK to help establish the largest national autism research cohort committed to accelerating the understanding of autism. We need large numbers of individuals to power new research to isolate insights and potential genetic or other causes of autism.
SPARK will be successful only by collecting a significant amount of data provided by the autism community. You hold the power to shape the future of autism research.