The Autism Inpatient Collection (AIC) study was performed by the Autism and Developmental Disorders Inpatient Research Collaborative (ADDIRC), led by Matthew Siegel (PI), and Susan Santangelo (Co-I). It was funded by the Simons Foundation Autism Research Initiative (SFARI) and the Nancy Lurie Marks Family Foundation.

The study 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. This setting was targeted in order to capture individuals with autism who may be underrepresented in datasets derived from outpatient or community settings.

A phenotypic battery (including surveys examining the child’s social communication, aberrant behaviors, emotion regulation, adaptive functioning and other domains) was performed. Data was also collected on the child’s behavior, cognition and sleep throughout their inpatient stay. ADOS-2 and Leiter Cognitive tests were performed by trained research staff. Physiologic data was collected from a subset of participants. A detailed list of these measures can be found in the AIC Research Welcome Packet.

Recruitment was completed in May 2024, and the collection ultimately includes data from 1,555 individuals with autism, a significant portion of whom have minimal verbal ability, intellectual disability or both. Blood samples (or saliva when blood could not be obtained) were collected from the proband and biological parents. These samples are stored in a central repository (Sampled), managed by SFARI. Whole-exome sequencing of DNA extracted from these samples was completed. The final genetic and phenotypic datasets will be released in March 2025. Blood-derived cell types (LCLs and PBMCs) will be made available to approved researchers in Fall 2025, and induced pluripotent stem cell (iPSC) modeling is encouraged.

De-identified genetic data, phenotypic data and biospecimens are made available to approved researchers via SFARI Base. Contact SFARI Data and Biospecimen Repository (SDBR) at sdbr@simonsfoundation.org with any questions.

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