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Sunday, April 23, 2017

Thompson Center partners in America’s largest autism study

Study coordinator Amanda Shocklee: “The goal of SPARK is to speed up autism research, and we are looking into causes and treatments for autism."

March 18, 2017

MU’s Thompson Center for Autism joined 20 other major autism research institutions this past year in what is projected to be America’s largest autism study ever. Across all 21 locations, 50,000 subjects will be enrolled in the study, according to the study’s website.

The study, the Simons Powering Autism Research for Knowledge, is organized by Simons Foundation Autism Research Initiative, a large autism research organization.

“The goal of SPARK is to speed up autism research, and we are looking into causes and treatments for autism,” Amanda Shocklee, the study coordinator for the Thompson Center, said. “Specifically, we’re focusing on genetic links with autism.”

SFARI chose the center because of its geographic location and the center’s reputation for exceeding expectations for studies, Stephen Kanne, the executive director of the Thompson Center, said in an email.

The study will enroll people diagnosed with autism and their immediate family members. Since institutions will have such a massive catalog of previously researched families, this project will create a community of families already interested in research who can be easily contacted with more studies.

Therefore, even though SPARK has a three-year enrollment period, it is designed to be a much more long-term project.

“Another part of SPARK is that families will potentially be notified about other research opportunities,” Shocklee said. “That’s sort of a part of the community piece of SPARK. So it's really building a community of people who want to contribute and want to help.”

Kanne said in an email that this research also helps the center because it will have access to SPARK’s data in order “to make contributions to our knowledge of autism for years into the future.”

Most of the participating institutions are on the coasts, so the Thompson Center aims to have a geographically wide reach in addition to their current patients. Shocklee said she hopes as many people in surrounding states become aware of SPARK as possible.

“In comparison to some of the other sites that are working on the study, since we are located in Columbia … it takes a little bit more work for us to reach those further distance locations and families,” Shocklee said. “But I think so far, we have been able to do a fairly good job at it.”

In addition to recruiting families who are already patients at the Thompson Center, they have been sending letters and emails promoting the study. Representatives from the Thompson Center also go to autism awareness events and resource fairs in order to advertise the study outside of Columbia’s immediate area.

Kanne said SPARK remains fairly involved with partnered institutions in order to ensure the project progresses smoothly.

“The SPARK team at the Simons Foundation monitors the progress of each study site and holds monthly all-site calls to provide updates as well as weekly calls with each site coordinator to work on technical issues that participants may be experiencing,” Kanne said in email. “Furthermore, the Simons Foundation provides sites with information on their educational webinars that can be shared with parents and professionals.”

The study is done mostly online. Participants fill out simple questionnaires about their medical history and communication skills. They also send a saliva sample back to the Thompson Center.

“It’s easy for families to be a part of study,” Shocklee said. “They can do it all from home and don’t have to come to the Thompson Center for a study visit or anything like that.”

Shocklee said the Thompson Center was getting a positive response so far and is excited to see how the project will help in the future.

“We’ve had a really great response from families that we’ve spoken with or helped to get enrolled in it,” Shocklee said. “So that’s exciting for us to see as well. On top of us being enthusiastic about it, so are families.”

Edited by Kyle LaHucik | klahucik@themaneater.com

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