SFARI Base is a clearinghouse for autism and autism-related research data and biospecimens supported by the Simons Foundation Autism Research Initiative (SFARI) as well as an online portal for the submission of research recruitment requests. It contains data from the following cohorts:
- Simons Simplex Collection (SSC)
- Simons Searchlight
- Simons Foundation Powering Autism Research for Knowledge (SPARK)
- Autism Inpatient Collection (AIC)
- Autism BrainNet
Researchers can request access to phenotypic, genetic, or imaging data; order biospecimens; and/or submit a research match application to recruit individuals or families for future research studies. Instructions on how to access SFARI Base and request access to resources are detailed below.
- Not all types of data and biospecimens are available for every cohort and subject.
- The use of SSC, Simons Searchlight, AIC data and biospecimens, and Autism BrainNet tissue, is limited to projects related to advancing the field of autism and related neurodevelopmental disorder research. SPARK phenotypic and genomic data do not have this limitation.
- All applications will be reviewed to ensure the use of data and biospecimens is in compliance with the Institutional Review Board (IRB)-approved consent language.
- Because of limitations imposed by participant consent, access to all locally-stored or cloud-stored data from research subjects must be controlled by the approved investigator at all times–i.e., never made publicly accessible or shared with other investigators. Approved investigators must not share access or distribute data to any other researcher without prior SFARI approval.
- All investigators using SFARI resources must adhere to the guidelines outlined in our Acknowledgment Policy.
- Log into SFARI Base here. 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 for 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. The standard RDA can be seen here.
- 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 appropriate committee.
Answers to Frequently Asked Questions are available in the Researcher Welcome Packets. These can be downloaded here for each of the different cohorts:
- SSC Researcher Welcome Packet
- Simons Searchlight Researcher Welcome Packet
- SPARK Researcher Welcome Packet
- AIC Researcher Welcome Packet
Biospecimen prices are listed here.
If you have additional questions or encounter issues during the application process, please contact email@example.com.
If you have additional questions about the Autism BrainNet tissue request process, please contact firstname.lastname@example.org.