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
Open Data (data that does not have
Conditions for Use.)
Controlled Data (data with
Conditions for Use), you must fulfill the
Conditions for Use set by the data contributor. On the specific
Table's page, click on the orange
Show unmet conditions box in the center of the header. This will open a dialog box with directions on how to meet the
Conditions for Use for the
Table (see example, below). 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.
Each Synapse user wishing to access
Controlled Data must individually agree to the
Conditions for Use to access that data.
Synapse houses Bridge data, data collected through research apps. 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.
Each Synapse user wishing to access Bridge data must individually agree to the
Conditions for Use.
Any human data shared in Synapse, with or without
Conditions for Use, must be de-identified according to HIPAA Standards and
all applicable privacy laws and regulations [see Contributing Data, above]. If you believe data made available in Synapse has been posted with inappropriate
Conditions for Use contact the ACT at firstname.lastname@example.org or click on the
Report Issue flag (found at the center of the header). This will trigger an email to the ACT who will contact you for more details.