The Autism Inpatient Collection provides a comprehensive registry of biological and clinical data on over 1,400 youth with autism spectrum disorder (ASD) that can be used by approved researchers to increase inclusion of those who are severely affected by ASD in research. The goal of the current project is twofold. Firstly, it is to further expand this collection to ultimately include data from 1,600 youth. Secondly, Matthew Siegel and colleagues plan to test their ability to use physiological signals obtained through wearable biosensors to predict the imminent onset of aggressive behaviors, which may open a new window for intervening before a challenging behavior occurs.
Autism Cohorts
The Interactive Autism Network (IAN) is an online setting bringing together individuals affected by autism spectrum disorder (ASD) and researchers studying ASD. The mission of IAN is to accelerate ASD research in order to improve the lives of people living with this disorder. IAN has fulfilled an important need by offering valuable services to the research community and contributes directly to knowledge about ASD through peer-reviewed publications. IAN also involves the community in the research enterprise by providing clear, family-friendly, evidence-based information about ASD and ASD research.
The Kaiser Permanente Autism Family Biobank Study is a three-year project at Kaiser Permanente Northern California. The study is open to Kaiser Permanente Northern California members with autism spectrum disorder (ASD) and their biological parents.
Advancing scientific knowledge for individuals severely affected by autism is a strategic priority for the leading autism science foundations and the National Institutes of Health. Knowledge and treatment options continue to lag for those who are nonverbal, have an intellectual disability or display challenging behaviors, in large part due to these groups’ underrepresentation in study samples. To address this critical knowledge gap, the Autism and Developmental Disorders Inpatient Research Collaborative (ADDIRC) is performing the Autism Inpatient Collection (AIC) study.
Rhode Island is emerging as a national leader in innovative, integrated research and treatment for autism spectrum disorders. With regard to serving people with developmental disorders, the state has a deep tradition with strong relationships among academia, government, educators, service providers and families. Demographically, Rhode Island is a microcosm of the U.S.; it has a relatively stable population located within a small geographic region, which works well for longitudinal and population-based epidemiological studies.