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CFS edits-Synapse Data Contribution and Use Procedure

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Synapse is an informatics platform bringing together scientific data, analysis tools, and models into a common collaborative research space. In Synapse, registered users can upload, share, analyze and/or export data, analysis codes and results. The principle aim behind Synapse is to promote cooperative data-intensive science. However, in certain cases data sharing must be restricted or closely controlled due to conditions in the informed consent, legal contract and/or privacy requirements. This wiki highlights the rules for contributing, sharing and analyzing data on Synapse.

To learn more about Synapse data use requirements see the links in the sections. If you have questions this wiki does not answer, please contact the Synapse Commons Access and Compliance Team: act@sagebase.org

See detailed SOP on data sharing and data use in the Synapse Commons

 

 

Before using Synapse

All Synapse users must have read and agreed to the Synapse Commons Terms and Conditions of Use in order to use the Synapse system

Here is the full Synapse Commons Terms and Conditions of Use document

 

 

Data organization

Data in Synapse is assigned to 1 of 3 data access tiers, based on data access restrictions. These are assigned by the Data Contributor and govern data access and distribution by the Data User

Synapse tiers

  1. Open Access
  2. Restricted Access
  3. Controlled Access

 

See the Synapse Commons Data Sharing Policy for more details

 

 

Data Contributor

Rules for Uploading Data to Synapse

 

Before Loading Data

Before uploading data to Synapse make sure that all human data is de-identified in compliance with HIPAA guidelines.

Summary of the HIPAA privacy rule 

 

 

For questions about assigning data to any of the 3 access tiers please contact the Synapse Commons Access and Compliance Team: act@sagebase.org

Open Access

This is data that may be shared with every registered Synapse user in an unrestricted manner

Examples:

  • Nonhuman data
  • Human non-genotype data without additional limitations
  • Human genotype data obtained from:
    • Deceased individuals
    • Data has already been made public with no restrictions elsewhere
    • The individual has consented for data sharing
  • Human copy number variation (CNV) data
  • Summarized genotype data such as genotype frequencies
Restricted Access

This is data that may be shared following user agreement to comply with additional data-specific terms

Examples:

  • Limitations on use based on; 
    • Research field
    • Type of analysis
    • User affiliation (e.g., nonprofit only)
  • Obligation to partner with the data generator
  • Requirement for the return of results
Controlled Access

This is data that require additional protections for human subjects. 

Examples:

  • Sequencing and/or genotype data from living individuals
  • Data from 'vulnerable populations' as defined by the OHRP
  • Identifiable 'special categories' of personal data from European subjects as defined by the European comission (EU Directive 95/46/EC)

OHRP

EU Directive 95/46/EC

 

 

 

Data User

Rules for Accessing & Redistributing Synapse Data

 

For questions about accessing and redistributing data from any of the 3 access tiers please contact the Synapse Commons Access and Compliance Team: act@sagebase.org

Open Access

Data labeled as Open Access can be used and redistributed with no other requirements than acceptance of the Synapse Terms and Conditions on Use. All data in Synapse is Open Access unless otherwise specified.

Restricted Access

Data labeled as Restricted Access may be used following agreement to comply with additional data-specific terms

When accessing data that has been assigned the Restricted Access tier you are shown a dialog with the data specific terms of use as created by the data contributor, as shown below.  If you accept the terms, then an access approval is created

If you agree to the terms of the Restricted Access data, you are responsible for ensuring that the data is not made openly available by you either through your Synapse projects or in any other way

Controlled Access

Data labeled as Controlled Access requires approval for access by the Synapse Commons ACT. This data may not be shared

When accessing data that has been assigned the Controlled Access tier you will be shown a dialog box requiring you to contact the ACT in order to learn the access restrictions specific to these data. This application must contain

  • Project Name
  • Principal Investigator
  • Organization
  • Phone Number
  • Application Date
  • Research Plan
  • Non-technical summary
  • Listing of Key Personnel
  • IRB approval

 

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