Autism Researchers Collaborative (ADDIRC) Awarded $1.2 Million Grant to Study Severe Autism
Dr. Siegel, a clinical scientist at the Center for Outcomes Research and Evaluation and Director of the Developmental Disorders Program, Spring Harbor Hospital, is spearheading an exciting project that aims to develop a comprehensive registry of clinical and biological data on severely affected children and adolescents with Autism Spectrum Disorder (ASD). Dr. Siegel and his research team will gather data on the dimensions of expressive language ability, emotional regulation, aggression, self-injurious behavior, and intelligence, and examine the relationships among these critical factors. The project represents a partnership between MMCRI and Spring Harbor Hospital, as well as collaboration with five other clinical sites that treat patients with ASD.
Individuals severely affected by an ASD, particularly those with intellectual disability, significant expressive language impairments, and/or self-injurious behavior, have been understudied. As many as 50% of children with ASD fail to develop functional language, 30-50% have intellectual disability, and up to 55% have a lifetime incidence of self-injurious behavior. Although rigorously collected phenotypic and biological data have contributed greatly to ASD research, adequate data from severely affected individuals are lacking. This gap in our knowledge is particularly striking given that communicative and cognitive abilities are the best predictors of long-term outcomes in children with ASD. Barriers to the study of the severely affected ASD population include challenges in their recruitment and participation in outpatient research studies, limited contact of most investigators with this population, and a relative lack of validated measures for characterizing these individuals.
Dr. Siegel and his co-investigators in the Autism and Developmental Disorders Inpatient Research Collaborative (ADDIRC) have developed a research platform for advancing the clinical assessment and treatment of patients with severe ASD. Each year, over 1000 children and adolescents with ASD and serious behavioral disturbance are admitted to the six specialized psychiatric hospital units that comprise ADDIRC. The patient population is heavily weighted toward individuals with severe ASD. This project will establish multi-site data collection procedures and test these procedures in a prospective study of 500 subjects in the ADDIRC's inpatient ASD population. Ultimately, Dr. Siegel and his colleagues expect to establish a research platform capable of efficient recruitment and standardized assessment of 500-1000 individuals with ASD per year.
The hope is to utilize the behavioral outcome data and stakeholder process to develop and disseminate a clinical practice pathway for inpatient psychiatric treatment of individuals with autism. This will raise the standard of care in the ADDIRC units and inform best practices for psychiatry units in the U.S. and abroad. Maine Medical Center Research Institute is very grateful to the Simons Foundation and the Nancy Lurie Marks Foundation for their generous support of this project.
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