Controlled-Access Human Data - Policy and Requests
A. Read and complete the Data Use Certificate Agreement (DUC)
B. Complete the online Data Access Request (DAR) form
C. Select the Requested Datasets
D. Print, Gather Signatures and Submit the DUC and DAR forms
E. Receive notification and further instructions
F. Create and upload your encryption keys
G. Renew access
Controlled-Access Human Data - Policy and Requests
Controlled-access data is not available until you have submitted the required documents and are approved by the Data Access Committee (DAC) in the process described in this section.
Controlled-access Data Policy
Controlled-access data is limited to the following types of data:
- All individual-level human data.
- Examples include demographic descriptors, phenotypic measures, 3D images, and sequencing data.
Before You Begin…
To create and submit the Data Access Request (DAR), you must join the FaceBase Users’ group (if you have submitted data for FaceBase, you should already be in this group).
- Click the “Sign Up” link at the top right corner of the FaceBase site - or use this link - and follow the prompts to log in with Globus and ask to Join the “FaceBase Users” group.
You will also need to gather the following information to complete this process:
- Research Use Statement – A description of your proposed work and how FaceBase data will be used. Note: If your access request is approved, this will be a publicly viewable description.
- Non-Technical Summary - A brief lay summary of your proposed work. Note: If your access request is approved, this will be a publicly viewable description.
- Brief description of how your proposed research is consistent with the Data Use Limitations (DULs) for the requested data.
- Brief description of data security measures implemented to ensure protection of any downloaded data.
- List of collaborators (internal and external)
- If your desired dataset requires IRB approval, you will need an Institutional Review Board (IRB) letter and IRB-approved protocol describing how you will use the data for research purposes. If you have questions about the process or IRB requirement, please contact the DAC at nidcrfacebasedac@mail.nih.gov. Also see our FAQ about IRBs here.
Applying for Access to Controlled Data
In order to access this data, you must follow the process outlined below.:
- A. Read and complete the Data Use Certificate Agreement (DUC)
- B. Complete the online Data Access Request (DAR) form
- C. Select the Requested Datasets
- D. Print, sign and submit the DUC and DAR forms
- E. Await notification
- F. Create/upload encryption key
The following video is from one of our online Bootcamps where we describe the process of requesting controlled-access data: