Simons Searchlight

Interested researchers can access genotypic and phenotypic data, biospecimens and induced pluripotent stem cells (iPSCs) from OCNDS patients using Simons Searchlight, an international research program with the goal of accelerating science and improving lives for people with rare genetic neurodevelopmental disorders. CSNK2A1 is one of many genes being studied through this initiative. 


The Simons Foundation Autism Research Initiative (SFARI) hosts these data on their SFARI Base Portal. Researchers must make a SFARI Base account to request data and/or samples. Here is a guide for how to make a request:

How to make a request on SFARI Base

Simons Foundation Autism Research Initiative (SFARI) provides researchers access to data and biospecimens collected from research participants.


Researchers must be the PI (listed on IRB letter) of your project to place a request.

Steps:

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1.  Go to base.sfari.org, and create an account.

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2. Once logged in, create or select a project and then select “New Request”.


  • A project can be reused to make multiple data requests over time as more data are available.
  • Using requested items for another project/scientific question must be approved independently in SFARI Base.
  • Upload your IRB approval letter (must include PI name, study number, and study title) and fill in IRB expiration date (or indicate exempt/no expiration).
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3. Proceed through to select the data requested.


  • Select all data/samples that you need.
  • Review the final list of requests in the gray box on the right side of the page.
  • List the name(s) of the researcher(s) who may be using these data. All listed researchers should also have SFARI Base accounts.
  • Complete the three data use/sharing policy checks.
  • Submit request.
  • The Researcher Distribution Agreement (RDA) process will be initiated once a researcher's request has been approved.
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4. You will be alerted when your request is accepted in about 2-3 weeks. Once approved, data can be downloaded as CSV files from SFARI Base.


For follow-up questions, email sdbr@simonsfoundation.org.