Deep Dive 2 min read

New Autism Initiative Aims to be 50,000 Strong

By Katherine Lagomarsino featured image Illustration by Katie Scott
Austism
Illustration by Katie Scott

Last summer, Genome published an in-depth article about autism that explored how the study of genetics is helping to unravel this incredibly complex, and increasingly common, disease. The Centers for Disease Control says that today approximately 1 in 68 children is diagnosed with autism. With scientists theorizing that 50 to 60 percent of autism cases may have a genetic connection, many researchers are trying to understand those genetics with the hope of using that knowledge to develop drug therapies. The key to that hope could lie in data collection, which, according to some, has been a major barrier to research.

In a roundup of data collection initiatives around the U.S., we mentioned the Simons Foundation Autism Research Initiative (SFARI), which at the time of the article had a repository of genomic data from more than 2,600 families that have one family member with autism. Recently SFARI launched a newer, even more ambitious initiative called SPARK (Simons Foundation Powering Autism Research for Knowledge). The research initiative’s goal is recruit 50,000 people with autism, along with their families, which would make it the nation’s largest autism research study.

Participation involves contributing medical and behavioral data, and submitting saliva for genetic analysis. Members of the cohort have a potential option of having the results of the genetic analysis returned back to them. (They’ll also receive a $50 gift card for the trouble.) SPARK is collaborating with 21 university-affiliated research clinics in 18 states and is also partnering with national and local autism advocacy groups to get the word out. Any data will be de-identified and then made available to the autism research community.

To participate or for more information, go to sparkforautism.org.