Ongoing Autism Studies
Autism Spectrum Disorders (ASD) affect 1.5% of the child population, and it is estimated that about 15,000 youths under age 20 have ASD in Oregon. The prevalence of this neurodevelopmental disorder has increased, raising concerns in the public. Advances have been made in early detection, diagnosis and management, and behavioral and educational interventions. However, and despite significant improvements occurring with age, ASD are life long disorders associated significant individual and familial distress, and high personal and societal costs.
Research into the causes of ASD has gained serious momentum in the last 15 years, yielding significant discoveries in genetic variation that underlies ASD in up to 30% of the cases. The contribution of environmental causes of ASD is poorly understood.
OHSU is a leader in Oregon and the US in research into neurosciences, and senior investigators at OHSU are active in fostering a better understanding of the causes of ASD, developing animal models to elucidate biological mechanisms, understanding brain connectivity and mapping neuronal systems that underlie socio-communicative deficits, investigating population health and environmental risk factors, and translating their findings into better improved clinical care and treatment. OHSU clinical and research teams are making rapid advances that will benefit our patients and the population from Oregon and beyond.
In addition to SPARK there are other opportunities to be actively involved with autism research. All of these studies have a connection to OHSU, though some of them do not take place at the main hospital on Marquam Hill.
SPARK (Simons Foundation Powering Autism Research for Knowledge)
OHSU invites you to learn more about SPARK, a new online research study sponsored by the Simons Foundation Autism Research Initiative. The mission of SPARK is clear: speed up research and advance our understanding of autism by creating the nation’s largest autism study. Joining SPARK is simple – register online and provide a DNA sample via a saliva collection kit in the comfort of your own home.
Who’s eligible? Anyone who has a professionally diagnosis of autism and their family members.
TORCH (The OHSU Repository for Childhood Developmental Disorders)
TORCH is a new effort by a team of clinicians and researchers at OHSU to create a research repository and registry that will transform our understanding of childhood developmental disorders such as autism, intellectual disability, epilepsies, developmental delays, and other conditions.
Who's eligible? Anyone with a developmental disorder.
How to join: Email study coordinator Hadley Morotti at email@example.com, or call at (503) 494-2971
Autism Identical Twin Study
This study is to learn more about the genetic factors related to autism by studying pairs of identical twins and their families. The goals of the study are to examine the developmental history of identical twin pairs where one or both twins have an ASD diagnosis, to find new genetic factors that may be related to the risk of developing autism, and to store data and samples in a repository for future studies of autism and other developmental disorders.
Who's eligible? Pairs of identical twins (or other multiples), at least one of whom has a diagnosis of autism.
How to join: Email study coordinator Hadley Morotti at firstname.lastname@example.org, or call at (503) 494-2971
Autism Brain Imaging Study
A study researching the social and emotional development in adolescent boys (11-17 years old) with high functioning autism spectrum disorder/Asperger Syndrome. The study involves paper and pencil, computer tasks, and a brain scan (where children will watch movies and answer questions while we take pictures of their brain!).
Who’s eligible? Adolescent males 11-17 years old with high functioning autism spectrum disorder/Asperger Syndrome. Participants should be verbal and without an intellectual disability.
How to join: If you have any questions, please email email@example.com or call (541) 346-5213 (leave a message for the autism study with your name, number, and email)
COAST (Continuum of Autism Spectrum Traits)
A study to learn whether the newly developed COAST survey tool can provide an accurate diagnosis for children suspected of having autism.
Who’s eligible? Parents of children and adolescents ages 6-18 years old who have been diagnosed with autism or severe emotional disturbance.
How to join: Call or email Kate Panaccione (503) 494-2669 or firstname.lastname@example.org