For Researchers and Healthcare Providers

Simons Searchlight gathers family, medical, developmental and behavioral information through online surveys and phone interviews with families and individuals. The latest data release from December 2023 includes over 3,600 individuals with 15 copy number variant (CNV) and 94 single gene variant conditions associated with autism and related neurodevelopmental conditions, with 19 genetic communities included for the first time. Researchers can request access to this data via SFARI Base below.

Details on surveys administered can be found in the Researcher welcome packet.

• Log into SFARI Base. If you do not have a SFARI Base account, you may create one. As part of account creation, you will need to affiliate with an institution. If your institution is not registered on SFARI Base, you will be prompted to provide institution details as part of registration. This includes the name and email address of a Signing Official who has authority to represent your institution in a legal agreement, similar to a material transfer agreement.
• Review your institution’s executed Researcher Distribution Agreement (RDA) and agree to the joinder to the RDA. View the standard RDA.
• Create a SFARI Base project, which includes the title, abstract, and an IRB approval or exemption document.
• Create a SFARI Base request, which includes specifying the type of resource you would like to request access to (phenotype, genetic, or imaging data; biospecimens; and/or research match application). The submitted request will be reviewed by the SFARI science team or the appropriate committee.
• Find answers to Frequently Asked Questions.
• Review the Simons Searchlight Researcher Welcome Packet.

For questions, contact the SFARI Data and Biospecimen Repository (SDBR) team at sdbr@simonsfoundation.org.

Simons Searchlight supports the research community by recruiting families with eligible genetic conditions and collecting long-term data for researchers. This data can be used to enhance external research projects that benefit the genetic communities studied by Simons Searchlight.

Researchers can request access to phenotypic, genetic, or imaging data; order biospecimens from the following SFARI research cohorts; and/or submit a research match application to recruit individuals or families for future research studies.

Active research studies:

• Simons Searchlight: Is an international research program for genetic conditions that are associated with rare neurodevelopmental disorders. We aim to collect information from participants to better understand the life course of these individuals. Learn more about Simons Searchlight 
• Simons Foundation Powering Autism Research (SPARK): SPARK recruits and engages a community of people with autism and their families that live in the United States to participate in research studies. They collaborate with 31 university-affiliated autism centers across the US. Learn more about SPARK 

Available data from previous research programs:

• Simons Simplex Collection (SSC): Approximately 2,600 simplex families participated in the SSC, each of which has one child affected with an autism spectrum disorder, and unaffected parents and siblings. 1,500 are still contactable currently. Learn more about Simons Simplex Collection
• Autism Inpatient Collection (AIC): Includes natural history information on 527 individuals with autism that were admitted to one of six specialized inpatient child psychiatry units in the United States. Learn more about Autism Inpatient Collection 

SFARI offers research funding to scientists at academic institutions as part of their periodic Requests for Applications (RFAs).  Monitor this website for these funding opportunities.

Through the Simons Searchlight Research Match program researchers can apply to recruit individuals enrolled in Simons Searchlight for new research studies. Researchers interested in recruiting Simons Searchlight participants into their studies can submit an application via SFARI Base. Approved researchers will receive further information about how to contact families.

To date, 3,213 families participating in Simons Searchlight have been invited to join a study; 1,760 of these families have agreed to join studies through Research Match.

Learn more about the Simons Searchlight Research Match program.