Data shared in Synapse may have
Conditions for Use that define restrictions on how it may be disclosed or what the data set may contain based on privacy laws or regulation.
You must be a
Certified User to contribute data to Synapse. You are responsible for determining if the data you would like to contribute is
Controlled Use and therefore requires
Conditions for Use. Carefully consider the specific risks and appropriate protections required before sharing your data.
If there are no ethical, legal or regulatory reasons to impose
Conditions for Use, the data can be used for any lawful research purpose. All human data shared in Synapse, with or without
Conditions for Use, must be de-identified according to HIPAA standards and comply with all applicable privacy laws and regulations. Guidance on de-identification according to HIPAA rules can be found here.
Conditions for Use can be set at the
Table level. We recommend grouping
Files that require the same
Conditions for Use in a dedicated
Folder within your
Project. For more information about setting
Conditions for Use please see Access Controls and Data Governance.
Certified users can view, download, and use data that do not have
Conditions for Use.
Controlled Use data you must fulfill the
Conditions for Use set by the data contributor. On the entity page, select the orange
Show unmet conditions box in the center of the header to open a dialog box with directions to meet the
Conditions for Use. In many cases, access requires that you read and agree to data-specific terms electronically in a clickwrap contract. Occasionally, access to
Controlled Data requires additional steps, like having your analysis plan approved by an ethics board or IRB.
Synapse houses data collected through research apps. This data is called Bridge data. This data has been donated by thousands of volunteers
from around the world. Bridge data is only accessible to Users with a
Validated Profile. To learn more see Synapse User Credentials.
Controlled Data must individually agree to the
Conditions for Use to access the data. Please be mindful when sharing information. Do not send data or metadata via email.
If you believe the data made available in Synapse have been posted inconsistently with the associated
Conditions for Use, use the Report Issue flag in the header of the relevant file, table or folder.
Flagging the data in this way will alert the Access and Compliance Team who will contact you for more detail. You may also email the Access and Compliance Team at firstname.lastname@example.org directly to report possible incidents.