The Autism Inpatient Collection (AIC) study is being performed by the Autism and Developmental Disorders Inpatient Research Collaborative (ADDIRC) and is directed by Matthew Siegel, M.D., and Susan Santangelo, Sc.D. It is funded by the Simons Foundation Autism Research Initiative (SFARI) and the Nancy Lurie Marks Family Foundation.
The study began in October 2013 and was designed to produce a collection of phenotypic and genetic data from children with a clinical diagnosis of autism who have been admitted to one of six specialized inpatient child psychiatry units in the United States.
A number of surveys examining the child’s social communication, adaptive and aberrant behaviors, emotion regulation, adaptive functioning and other domains are performed as part of the study, in addition to measures of parenting stress and self-efficacy. Data are also being collected on the child’s behavior, cognition, sleep and other dimensions by clinical and research staff throughout their inpatient stay. A detailed list of these measures can be found in the AIC Research Welcome Packet.
Phenotypic data from 527 individuals with autism are currently available to approved researchers via SFARI Base. Recruitment is ongoing, and the collection will ultimately include data from more than 1,600 individuals with autism.
Blood samples (or saliva when blood could not be obtained) are also being collected from the proband and biological parents. These samples are being stored in a central repository (RUCDR Infinite Biologics). Whole-exome sequencing of DNA extracted from these samples is currently being performed. De-identified genetic data will be made available to approved researchers via SFARI Base, with an expected release date of fall 2020.
Current clinical research sites
Bradley Hospital, Rhode Island
(Investigator: Giulia Righi, Ph.D.)
Cincinnati Children’s Hospital Medical Center, Ohio
(Investigators: Martine Lamy, M.D.)
Spring Harbor Hospital, Maine
(Investigators: Matthew Siegel, M.D., and Susan Santangelo, Sc.D.)
Western Psychiatric Institute and Clinic of the University of Pittsburgh Medical Center, Pennsylvania
(Investigators: Carla Mazefsky, Ph.D.)
Past clinical sites
Children’s Hospital Colorado
Sheppard Pratt Health System, Maryland
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