SPARK: Igniting Autism Research, Improving Lives
In April 2016, the Simons Foundation Autism Research Initiative (SFARI) launched a landmark autism research project in the U.S with the goal of building a research community of tens of thousands of individuals with autism and their families. This long-term online study is called SPARK, which stands for 'Simons Foundation Powering Autism Research for Knowledge.'
OHSU is one of 21 of the nation's leading medical schools and autism research centers selected to join SPARK to help recruit individuals and families affected by autism spectrum disorder.
The mission of SPARK is simple: to speed up research and advance our understanding of autism to help improve lives. The entire autism community is invited to participate.
SPARK aims to build a research community of 50,000 individuals who will share medical and genetic information with scientists and engage in ongoing research. The data shared with SPARK will power important new autism research that aims to advance the understanding of autism's diversity, as well as provide meaningful information and resources to participants.
Joining SPARK is simple. Individuals and families may register online and provide a DNA sample via a saliva collection kit in the comfort of their own home. They may also register in person at OHSU by contacting us at:
In addition to the SPARK, the CDRC Autism Program is active in an array of research projects related to autism spectrum disorders. A sample of those research projects is listed below.
To find out more information on these projects, or to find out if you qualify to be a participant, please call our research coordinator at 503 973-6478.
Autism Treatment Network Registry
The goal of the ATN Registry is to provide data to identify medical conditions and track medical, behavioral, and quality of life outcomes in children with ASD to help identify best practices and improve care. Thus far, we have targeted several specific areas of interest: sleep abnormalities, gastrointestinal disorders, neurological issues, metabolic disorders, and psychopharmacology.
Autism Intervention Research Network on Physical Health
In September of 2008 the ATN received a grant of $12 million over three years to serve as the Autism Intervention Research Network on Physical Health (AIR-P). The network grant was part of four initiatives developed by the Maternal and Child Health Bureau of the Health Resources and Services Administration under the Combating Autism Act.
This grant provides significant financial support to supplement efforts the ATN had already begun in developing evidence-based guidelines and tools for the diagnosis and treatment of autism and associated conditions including sleep, gastrointestinal (GI) disturbances and neurological disorders.
The AIR-P is interested in making doctors and other clinicians more knowledgeable about autism and keeping families informed about our activities and enabling family participation in research.
Maternal Cholesterol & Autism Study
There is accumulating evidence that autism may in some cases be associated with altered cholesterol metabolism. Whether cholesterol abnormalities are cause or consequence is not known but because cholesterol is essential for normal brain development, we have postulated that cholesterol deficiency may be a risk factor for autism.
The goal of the Maternal Cholesterol & Autism study is to determine if cholesterol deficiency during pregnancy is a predictor of autism in the offspring. This study is funded by a grant from HRSA and AIR-P. It is a multisite study (OHSU, Kennedy Krieger Institute, and Colorado Children's; all 3 sites are ATN sites) with OHSU being the main site.
Study participants are recruited from the pool of ATN families available at each site. The study may provide targets for treatments aimed at reducing the risk for autism.
Autism Treatment Network Biorepository
Because of the extreme heterogeneity of the ASD phenotype, the development of effective treatments will require the availability of multi-site collaborative research networks that provide access to large collections of patient blood, urine, and tissue samples that are well-characterized.
The primary aim of this study is to expand the data collection efforts of the Autism Treatment Network to include the collection of biomaterials. This is done through a collaboration with the USC Center for Genomic and Phenomic Studies in Autism and the Autism Genetic Resource Exchange (AGRE), the Center's genetic and clinical data repository.
The ATN contributes comprehensive medical data from the ATN Registry and biological materials on the ATN enrollees and their parents to the AGRE repository ensuring maximal access and utility by the research community. The addition of this data will increase the depth and breadth of both the ATN and AGRE data, thereby facilitating genetic studies in autism, accelerating the understanding of the causes of ASD, and facilitating discovery of new therapeutics.
OHSU was chosen as one of four ATN sites in the nation to test the feasibility of collecting and banking blood and urine specimens from ATN participants. This is a 2-year pilot study which investigators plan to transform into a longer-term study after feasibility is confirmed.
OHSU Center for Spoken Language Understanding (CLSU)
OHSU's Center for Spoken Language Understanding works on a wide range of projects on autism, funded by the National Institutes of Health, the National Science Foundation, the Nancy Lurie Marks Family Foundation, Autism Speaks, and the Swigert Foundation. Since 2006, CSLU has been the recipient of more than $12M of funding for its autism research, making it the best-funded autism research program in the state.
The Center's research on autism has a unique focus, which is the development of new speech technologies, language technologies, and signal processing methods to capture behavioral biomarkers for autism from audio recordings, video recordings, and recordings of arm and leg motion. Current behavioral biomarker projects include four projects, on prosodic markers (i.e., melody, loudness, rhythm); on language markers (e.g., echolalia, repetitiveness, grammatical errors, lack of verbal reciprocity); on measurement of dis-coordination between verbal and non-verbal behavior; and on detecting autism in infants through analysis of vocal and motion behavior.
The Center conducts three additional projects, on a computer based remediation for social skills training; on a Brain Computer Interface for non-verbal individuals with autism; and on speech generating devices that mimic the user's voice for individuals who require such devices to communicate. In each of the biomarker projects, the aim is not only to increase the accuracy of detection of known behavioral markers of autism, but also to discover new behavioral markers that may lead to the discovery of genetic and other factors underlying autism.
The practical value of these projects is that they may enhance the accuracy of diagnosis, make diagnostic services more accessible by providing easy-to-use technologies that can be used in schools or at home, and lower the cost of diagnosis.
Foundation Funded Research Projects
QUEST/OHSU FoundationStem Cells and Autism Study
According to recent data, autism frequency in US children is greater than that of pediatric cancers, diabetes and AIDS combined and the prevalence of the disease is increasing. Yet, to date, the cellular and molecular mechanisms responsible for the disease have not been elucidated and no cure is available.
A great impediment to progress in autism research is the lack of suitable models of the human autistic brain. Hence there is a need for new models that could be used to understand the molecular origins of altered brain function in autism and to screen for promising new therapeutic compounds.
The goal of the study is to create a cellular model of the autistic brain using recent stem cell research breakthroughs. Specifically, we are working to create autistic brain cells using autistic individuals' own skin cells reprogrammed into stem cells. These skin/stem cell-derived cells are then used to study gene expression and intracellular signaling pathways in comparison with cells derived from skin cells obtained from non-affected individuals.
The project is funded by the QUEST and OHSU Foundations and is conducted by a multidisciplinary team of investigators from the Department of Pediatrics and the CDRC at OHSU and investigators at Children's Hospital of Orange County. This research has the potential to lead to successful breakthroughs in autism research, attract future NIH research funding, and raise autism's public, scientific and medical awareness.
Murdoch Charitable Trust
Mutation Screening in Autism
Some reports estimate that up to 90% of all autism cases have a genetic origin. This project is about finding a genetic cause to familial autism. Families with multiple affected children and their relatives are recruited. Screening for gene mutations is performed using high-throughput whole exome sequencing techniques available in the Massively Parallel Sequencing Shared Resources laboratory at OHSU. The project is conducted by a multidisciplinary team of investigators from the Department of Pediatrics, CDRC, and OCTRI Translational Bioinformatics. It is supported by a grant from the Murdoch Charitable Trust.
Simons Foundation Typical and Atypical Brain Development study
The first two decades of life represent a period of extraordinary developmental change in sensory, motor and cognitive abilities. One of the ultimate goals of developmental cognitive neuroscience is to link the complex behavioral milestones that occur throughout this time period with the equally intricate functional and structural changes of the underlying neural substrate. Achieving this goal would not only give us a deeper understanding of normal development, but also a richer insight into the nature of developmental disorders.
The goal of this project is to examine differences in the brains of those between the ages of 7 and 17 with and without ADHD (Attention Deficit Hyperactivity Disorder). We will also see how these differences might relate to other disorders such as Autism. To accomplish our goal we will ask children to complete a series of thinking tasks. We will also ask children to complete a brain scan that will allow us to compare the brains of healthy children with those of children with ADHD and those with Autism.
The study also includes an optional component, which is to bank blood and/or saliva samples for future research about this condition.