SFARI Base is a central database of phenotypic and genetic information about families affected by autism and other neurodevelopmental disorders, provided as part of the Simons Foundation Autism Research Initiative (SFARI). It contains data from the following cohorts:
- Simons Simplex Collection (SSC)
- Simons Variation in Individuals Project (Simons VIP)
- Simons Foundation Powering Autism Research for Knowledge (SPARK)
- Autism Inpatient Collection (AIC)
Approved researchers can access phenotypic data, order biospecimens, order genetic or imaging data, and/or recontact families for future research studies. Instructions on how to access SFARI Base and request these resources are detailed below.
- Not all types of data and biospecimens are available for every cohort and subject.
- The use of SSC, Simons VIP and AIC data and biospecimens is limited to projects related to advancing the field of autism and related developmental disorder research. 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.
- The use of SPARK phenotypic and genomic data is not limited to projects designed specifically to advance the understanding of autism and related developmental conditions. Applications for access to data will be reviewed for approval. Availability may be restricted based on the interests of the participants and the status of related, ongoing research. Investigators are encouraged to collaborate in their approaches to SPARK data.
- Log in to SF I.D. here in order to access SFARI Base. If you do not have a SF I.D., create one here.
- Affiliate with an institution by going here. If your institution is not already registered on SFARI Base, you can send a request to email@example.com. Please include the name and email address for the Institutional Officer 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 sign the Joinder to the RDA.
- Create a project: This includes a title, abstract, and uploading an IRB approval or exemption letter. After this step, you will automatically be granted access to phenotypic data.
- To download phenotypic data, click on the tab titled “Download prepared phenotype dataset”.
- At this stage, you can also apply for access to other types of data and resources (eg. biospecimens, genetic or imaging data) or to recruit participants. Click on the “Request special SFARI resources” tab and provide your research project request details.
- All investigators using SFARI resources must adhere to the guidelines outlined in our Acknowledgment Policy.
Answers to Frequently Asked Questions are available in the Researcher Welcome Packets (the SSC, Simons VIP and SPARK document is available here; the AIC document can be downloaded here) and on the Learn About pages on SFARI Base.
Biospecimen prices are listed here.
If you have additional questions or encounter issues during the application process, please contact firstname.lastname@example.org.