Wednesday, May 10, 2017

OHSU SPARK Autism Spectrum Disorder Research Study


I was on Facebook the other day, and an ad came up for the OHSU (Oregon Health and Science University) SPARK Study. Perhaps you have seen it too? I wanted to find out what it was all about and report back to you all, so I contacted Lily Pacheco, the OHSU SPARK Study Coordinator, to get some more information.

The SPARK study is a multi-area research study about autism spectrum disorders (ASD). It is funded for three years (2016-2019) so far, and OHSU applied to be a part of the SPARK study and was awarded the grant last year. OHSU is one of only 25 research centers in the nation chosen to participate so far. “SPARK is funded by the Simons Foundation, which is a non-profit organization out of New York City,” and according to Pacheco, “they have put over 64 million dollars into autism research so far.”

The SPARK study is special, because it “is already the largest autism study in the US. The SPARK data will allow [researchers] to better understand the etiology of ASD and develop more effective and targeted treatments,” said Pacheco. While the research does involve genetics, researchers aren’t looking to cure autism, but are looking for ways to improve treatments, and they definitely need the help of participants. The study is looking for adults and/or children who have been diagnosed with ASD to participate. They encourage the person with ASD’s biological mother, biological father, and up to one biological sibling to participate as well. Pacheco stated that “although it is great when biological trios sign up, we encourage everyone with a diagnosis to participate even if there is only one biological parent, no parents at all, or if the child is in foster care or adopted—everyone is invited to participate. A professional diagnosis of ASD is the only eligibility criteria for joining the study. Verification of the diagnosis, although not initially required, will need to be provided at a later date.” Pacheco said that participants will only need to “answer some medical and behavioral questions online, and if they consent to genetics, they will be shipped saliva collection kit(s) for genome sequencing. There is no cost to the participant for the sequencing or the interpretation of results.” Pacheco noted that any “medically significant results will be communicated back to the family through a designated primary care physician or genetic counselor.”

As someone who has participated in research in the past, I can tell you that it is exciting to think that your information can be used to further scientific understanding. The SPARK study is just as thrilling. “The SPARK database will have long-lasting impacts on the trajectory of autism research. Researchers will have the ability to study the samples over time, and answer questions about autism that they never were able to before,” said Pacheco, “it is a very exciting time in autism research!” Even though the genetic samples will be used for a long period, participants do not have to worry, because “SPARK data will not be shared with other researchers without the consent of SPARK participants.” Pacheco noted that “SPARK wants to create a community of research participants to help drive the direction of autism research, and also to answer unknowns about ASD, such as how people age with ASD, [but]…each researcher will need to re-consent study participants for each [additional] research study, and participants will have the opportunity to participate or not participate—participants are in control of how their data will be used.”

And after the genetic material is collected? Well, that’s the fun part for researchers. Pacheco stated that, “researchers and scientists simply do not know enough about ASD, which is why SPARK’s efforts are so important. A very large data set is needed to tell us more about the underlying mechanisms responsible [for ASD]. To date, approximately 50-60 mid-to-high risk genes are associated with ASD, however, scientists believe there are as many as 300. In addition, non-inherited de novo mutations have been discovered as also being responsible for an ASD diagnosis, so much more investigation into the heterogeneity of ASD needs to occur. Environmental factors and the interplay between environment and genes needs to be investigated too.”

All in all, this sounds like a wonderful opportunity for the researchers at OHSU as well as for people in our community. Even if you don’t have ASD, you don’t need to be bummed out that you can’t participate. According to Pacheco “the OHSU SPARK team does hire volunteers several times throughout the year, usually for 6-12 month time commitments. If someone is interested in becoming a volunteer [Pacheco] recommends checking for an opening and then applying,” Alternatively, they can contact Lily Pacheco at or call her at (503) 974-6478.

For more information, please see the video below and/or refer to the OHSU SPARK website to get started at:

Let’s celebrate neurodiversity and science!

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