IPM Summer Camp Special 2017

Thousands of People With Autism Join New Online Genetic Study

New genetic study aims to enroll 50,000 individuals with autism and their families, making it the most ambitious study of the condition’s genetics to date.

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 it was designed in consulta- tion with adults with autism, parents, researchers, clini- cians, 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. SPARK will provide access to online resources and the latest research in autism, which may provide participants and families with valuable infor- mation to help address daily challenges. For researchers, SPARK provides a large, well-charac- terized 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 partnering with 25 clinical sites across the country as well as autism organizations, service providers and key influencers to help spread the word about SPARK and to recruit participants. Through these strategic partner- ships, SFARI hopes to reach and engage a diverse and large number of individuals and families affected by autism. SPARK is entirely funded by SFARI, a scientific initiative within the Simons Foundation’s suite of programs. About Autism Autism is an umbrella term used to describe a group of complex developmental disorders — autism spectrum dis- orders — caused by genes or combinations of genes, per- haps in concert with environmental influences. These dis- orders are characterized by deficits in social communica- tion (both verbal and nonverbal) and the presence of repet- itive behaviors or restricted 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 that can be segmented — genetically and by the con- dition’s manifestation — can substantially advance such efforts. Anyone interested in learning more about SPARK or in participating may visit sparkforautism.org/ucd and be sure to like UC Davis MIND Institute on Facebook.

New genetic study aims to enroll 50,000 individuals with autism and their families, making it the most ambi- tious study of the condition’s genetics to date. Autism has a strong genetic component. To date, approximately 50 genes have been identified that almost certainly play a role in autism, and researchers estimate that at least an additional 300 are involved. But to identify all the genes at play, many more genetic samples are needed from those with autism and their immediate families. That’s where SPARK comes in. SPARK is an online sci- entific study and community of individuals with autism and their families. Launched just a year ago, UC Davis MIND Institute in Sacramento, CA has partnered with SPARK in enrolling over 3,100 people, 1,104 of whom have autism. SPARK’s goals are twofold: first, to identify the hun- dreds of autism genes at play and to link them to the bio- logical mechanisms that they govern as well as to any envi- ronmental factors to which participants with autism may have been exposed. Researchers can better understand the condition’s causes by linking specific identified genes to the diverse array of symptoms, skills and challenges of those affected. Second, it seeks to connect these individuals and families to research opportunities that advance the under- standing of autism. Why genes? And why 50,000? It is estimated that it will take 50,000 genetic profiles of people with autism to identify a large percentage of the genetic factors contributing to autism. SPARK principal investigator Dr. Wendy Chung says, “Statistically, if we suc- ceed in working with 50,000 participants on the autism spectrum, we will be able to identify at least 250 genes that contribute to autism that can be used to better understand how the brain is different in individuals with autism and potentially identify targets to develop medications that can be used to support individuals with autism.” In a genetic study of this scope, it is important to collect not only DNA from the person with autism but also that of both of his/her biological parents (a ‘trio’). Trios enable sci- entists to identify whether an autism gene was passed down from a parent or ‘sprung up’ in a different way. More About SPARK SPARK (Simons Foundation Powering Autism Research for Knowledge) is a national autism research ini- tiative 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 this is not only to better

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Summer Camp Special 2017

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