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Interagency Autism Coordinating Committee (IACC)
Autism Research Database
Office of Autism Research Coordination (OARC)
 
Project Element Element Description

Project Title

Project Title

Characterizing the severely affected autism population

Principal Investigator

Principal Investigator

Siegel, Matthew

Description

Description

Individuals severely affected by an autism spectrum disorder, particularly those with intellectual disability, significant expressive language impairments or self-injurious behavior, have been understudied. Up to 50 percent of children with autism fail to develop functional language, 30 to 50 percent have intellectual disability, and up to 55 percent have a lifetime incidence of self-injurious behavior. Adequate phenotypic and biological 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 autism. Barriers to studying severely affected children 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. Matthew 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 autism. Each year, more than 1,000 children and adolescents with autism and serious behavioral disturbance are admitted to the six specialized psychiatric hospital units that comprise the ADDIRC. The patient population is heavily weighted toward individuals severely affected by autism. Siegel’s team aims to establish multi-site data collection procedures and test these procedures in a prospective study of 500 participants in the ADDIRC’s inpatient population. The goal is to develop a comprehensive registry of clinical and biological data on severely affected children and adolescents with autism. The researchers plan to look at the dimensions of expressive language ability, emotional regulation, psychiatric co-morbidity, aggression, self-injurious behavior and intelligence, and to examine the relationships among these critical factors.

Funder

Funder

Simons Foundation

Fiscal Year Funding

Fiscal Year Funding

276538

Current Award Period

Current Award Period

2013-2018

Strategic Plan Question

Strategic Plan Question

Question 7: What Other Infrastructure and Surveillance Needs Must Be Met?

Strategic Plan Objective

Strategic Plan Objective

Green dot: Objective has greater than or equal to the recommended funding. 7C. Develop and have available to the research community means by which to merge or link databases that allow for tracking the involvement of people in ASD research by 2010. IACC Recommended Budget: $1,300,000 over 2 years.

Project Link

Project Link

Characterizing the severely affected autism population (External web link)

Institution

Institution

Maine Medical Cetner Research Institute

State/Country

State/Country

Maine

Project Number

Project Number

296318

Federal or Private?

Federal or Private?

Private

Received ARRA Funding?

Received ARRA Funding?

No

History/Related Projects

History/Related Projects

Characterizing the severely affected autism population | 301273 | 2014 | 296318
Characterizing the severely affected autism population | 146315 | 2013 | 296318

 
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