Autism Cohorts: Autism Inpatient Collection

Overview

The Autism Inpatient Collection (AIC) is a phenotypic and genetic dataset drawn from children with a clinical diagnosis of autism who were admitted to one of six specialized inpatient child psychiatry units in the United States. Because this population is often underrepresented in datasets built from outpatient or community settings, AIC offers researchers a rare window into individuals with autism who have more severe or complex presentations — including many with minimal verbal ability, intellectual disability or both.

The study was conducted by the Autism and Developmental Disorders Inpatient Research Collaborative (ADDIRC), led by Matthew Siegel (PI) and Susan Santangelo (Co-I), and funded by the Simons Foundation Autism Research Initiative (SFARI) and the Nancy Lurie Marks Family Foundation. Recruitment closed in May 2024, resulting in data from 1,555 individuals with autism and their biological parents.

Study Design

During each participant’s inpatient stay, researchers administered a phenotypic battery covering social communication, aberrant behaviors, emotion regulation, adaptive functioning and other domains, along with the ADOS-2 and Leiter Cognitive tests, performed by trained research staff. Behavior, cognition and sleep were tracked throughout the stay, and physiologic data was collected from a subset of participants. A full list of measures is available in the AIC Research Welcome Packet.

Blood samples (or saliva, when blood could not be obtained) were collected from each proband and their biological parents and are stored in a central repository, Sampled, managed by SFARI. Whole-exome sequencing was completed on DNA extracted from these samples.

Available Data

AIC includes both genetic and phenotypic data, along with stored biospecimens:

• Phenotypic data: measures of social communication, behavior, emotion regulation, adaptive functioning, cognition (via ADOS-2 and Leiter testing), and sleep, collected throughout each participant’s inpatient stay.
• Genetic data: whole-exome sequencing from probands and their biological parents.
• Biospecimens: blood- or saliva-derived samples stored via Sampled; blood-derived cell types (LCLs and PBMCs) will be available to approved researchers starting fall 2025, and induced pluripotent stem cell (iPSC) modeling is encouraged.

The final genetic and phenotypic datasets are scheduled for release in March 2025.

Accessing the Data

De-identified genetic data, phenotypic data and biospecimens are made available to approved researchers through SFARI Base, SFARI’s data and biospecimen portal. Researchers with questions can contact the SFARI Data and Biospecimen Repository (SDBR) at [email protected].