Oregon Health & Science University Join the Nation's Largest Autism Study (OR UCEDD)

September 30, 2016

The Simons Foundation recently launched a landmark autism research project in the U.S with the goal of creating a new research cohort of 50,000 individuals with autism and their families. The project is called SPARK, which stands for ‘Simons Foundation Powering Autism Research for Knowledge.'

Oregon Health & Science University (OHSU) is one of the 21 project sites selected to be involved in this effort. Specifically, over the next three years, OHSU will recruit 2,600 individuals with a professional diagnosis of Autism Spectrum Disorder (ASD), and when possible, their biological parents. Over the past two months, our OHSU SPARK team has been working in conjunction with the OHSU University Center for Excellence in Developmental Disabilities (UCEDD) network. OHSU's UCEDD interim director, Rhonda Eppelsheimer, has been acting as a liaison between the OHSU SPARK team and UCEDD centers in ten US states and territories, including Montana, North and South Dakota, Nevada, Utah, Wyoming, Idaho, Alaska, Hawaii, and American Samoa. The support from the UCEDD network has been phenomenal, and has assisted tremendously in the success of our recruitment efforts thus far. Out of the 21 SPARK project sites, OHSU currently ranks third in recruitment, thanks in no small part to the UCEDD network.

The OHSU SPARK team looks forward to working more with UCEDD's to promote SPARK throughout communities (particularly rural communities) in the Northwest, Midwest, and Pacific Islands. The goal of SPARK is to connect participants to researchers and to offer them the opportunity to impact the direction of autism research by joining any of the future studies offered through SPARK. We want to create a culture of research among individuals with autism and their families, which will be cultivated and facilitated through the SPARK website. The website will have up-to-date research news, webinars from professionals in the autism field, and other resources for anyone who signs up. In the future we hope to add an interactive aspect to the website, enabling families to connect with one another and discuss research, share experiences, and participate in diverse autism communities.

Both adults and children with ASD and their families can participate. As a first step in the SPARK program, we will conduct the largest autism genetics research study in history, which will foster rapid progress towards understanding the etiology of autism and its diversity.

The UCEDD networks will continue to be part of our ongoing recruitment strategy at OHSU, bringing research opportunities to more rural parts of the United States, but perhaps more importantly, developing mutually beneficial relationships resulting in a reciprocal exchange of information and resources. OHSU's monthly autism seminar series has already been made available to our UCEDD partners. Our longer term goal is to engage in more training and research partnerships with UCEDD teams.

"We are incredibly excited to be a part of SPARK and connect individuals and families in communities across Oregon and North West states, to this large-scale effort that promises to catalyze autism research." Dr. Fombonne.

To learn more or participate in SPARK, visit www.sparkforautism.org/OHSU or contact Lily Pacheco at SPARK@ohsu.edu or 503-974-6478.