Autism Data Release: 1,500+ Genetic & Phenotypic Profiles
- The Simons Foundation Autism Research Initiative (SFARI) has made available phenotypic and genetic data derived from the autism Inpatient Collection (AIC), which includes more than 1,500 participants between...
- The AIC dataset focuses on individuals who may meet the criteria for profound autism, characterized by intellectual disability or minimal language skills requiring significant support.
- Matthew Siegel, founder and principal investigator of the AIC at Boston Children's Hospital, emphasized the importance of this resource.
SFARI Releases Autism Inpatient Collection Data
Updated June 20, 2025
The Simons Foundation Autism Research Initiative (SFARI) has made available phenotypic and genetic data derived from the autism Inpatient Collection (AIC), which includes more than 1,500 participants between 4 and 20 years old. These youths were hospitalized in child psychiatry units across the U.S.
The AIC dataset focuses on individuals who may meet the criteria for profound autism, characterized by intellectual disability or minimal language skills requiring significant support. This group is often underrepresented in autism research.
Dr. Matthew Siegel, founder and principal investigator of the AIC at Boston Children’s Hospital, emphasized the importance of this resource. “This dataset is the largest single collection of information on hospitalized children with autism,many of whom meet the criteria for profound autism,” he said.
Researchers hope that pairing phenotypic and genetic data will accelerate scientific inquiry and lead to targeted interventions for challenges such as aggression, self-injury, and emotional dysregulation.
The phenotypic measures include behavior,communication,emotion regulation,adaptive functioning,cognition,sleep,and parent stress. Blood or saliva samples were collected from the children and their parents, with whole-exome sequencing data now accessible.
Kelsey Martin, executive vice president of autism and neuroscience at the Simons Foundation, expressed excitement about providing this resource to the scientific community.All data and biospecimens are available to approved researchers via SFARI Base.
Credit: Kaboompics.com from Pexels
What’s next
Researchers plan to use the AIC data to further investigate the underlying causes of profound autism and develop more effective treatments and support strategies.