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Phenotyping of the Severely Affected Autism Population: Developing a Research Platform for the Study and Treatment of the Severely Affected Autism Population

Although rigorously collected phenotypic and biological data have contributed greatly to ASD research, adequate data from severely affected individuals are lacking. Barriers to the study of the severely affected ASD population include challenges in their recruitment and participation in outpatient research studies, the limited contact of most investigators with this population, and the relative lack of validated measures for characterizing these individuals.

The Autism and Developmental Disorders Inpatient Research Collaborative (ADDIRC) is dedicated to becoming a unique and singular 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 nine specialized psychiatric hospital units that comprise the ADDIRC. These hospital units are staffed by multi-disciplinary teams of highly skilled clinicians and investigators with unique expertise in assessing and caring for these patients. The ADDIRC patient population is heavily weighted toward individuals with severe ASD.

The ADDIRC is engaged in a two-year project to establish multi-site data collection procedures and to test these procedures in a prospective study of its inpatient ASD population. The project team, including clinical and research scientists from each ADDIRC site and scientific and administrative advisory groups, has expertise in the assessment of severe ASD, the collection and analysis of phenotypic and genetic data and the administration of collaborative research. The immediate goal of the network is to develop a comprehensive registry for the collection of clinical and eventually biological data on severely affected children and adolescents with ASD in order to systematically develop effective interventions for this population. The network will collect detailed data on the severely affected population, including the dimensions of intelligence, communication ability, emotional regulation and self-injurious behavior