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Request data and biospecimens

Data and biospecimens are available through SFARI Base, a central database of clinical and genetic information about families affected by autism.

Applying for access

Complete the application to request data and biospecimens on SFARI Base. Incomplete applications will not be reviewed.

Answers to Frequently Asked Questions are available in the Researcher Welcome Packet. Please direct specific inquiries about obtaining access to the Research Liaison.

Required institutional documents

Please note that each principal investigator (PI) who wishes to conduct one or more research projects using SFARI data and/or materials must submit the following materials from his or her institution as part of a complete application:

  • A signed electronic Researcher Distribution Agreement (eRDA) for the PI and any collaborators. The eRDA specifies the legal issues pertaining to research data and specimens, and requires approval from the PI's institution. A separate eRDA is required for each collaborator. A copy of the eRDA is available here (pdf). More information about this process is available on SFARI Base.
  • A letter from an Institutional Review Board (IRB). Each SFARI project led by a PI must be governed by a protocol approved or exempted by an IRB. A protocol specifies the regulatory issues pertaining to the research, and may include co-investigators at multiple institutions. You will need to obtain a PDF copy of the letter from your IRB approving or exempting your protocol.

Application instructions (via SFARI Base)

Prerequisites for access to SFARI resources

In order to access data or biospecimens from the SSC or Simons VIP, or request to recontact SSC families for future research, new researchers must affiliate with an institution, sign the Joinder Agreement to the SFARI Researcher Distribution Agreement, upload an IRB letter, and provide a proposed project title and abstract. If your institution has not yet signed the researcher distribution agreement (RDA), an email notification will be sent to your institutional official directing them to do so. The email will include a link to the online RDA and instructions on how to log in and sign the agreement. The Simons Foundation will then review and execute the RDA. After the RDA has been executed, you will be granted access to the phenotype data on SFARI Base.

How to order SFARI biospecimens, genetic data or imaging data, or recontact SSC families

After completing the prerequisites for access described above, you will be able to place a request for SFARI biospecimens or genetic data, or recontact SSC families. Go to the "Request SFARI resources" section of SFARI Base, select the type of request you would like to place, describe your research project (you will need to provide a title and abstract, and upload your institutional review board approval or exemption letter), and complete the resource request form.

If you would like to recontact SSC families or order SFARI biospecimens and you do not know the SFARI IDs for the participants you are interested in, go to the "Build a dataset" section of SFARI Base. Here you can apply filters to any of the fields in the various data collections, download data for participants that meet your criteria, and place a request for biospecimens or to recontact the families you selected.

Still have questions? Email them to collections@sfari.org. For additional information and FAQ, please see the Researcher Welcome Packet.

Acknowledgement policy

All SFARI-funded and non-SFARI-funded investigators who use SSC/Simons VIP phenotypic data and/or biospecimens must acknowledge their use of the collection(s). The acknowledgement policy can be found here.