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Request Access to Controlled Data | FaceBase

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Request Access to Controlled Data

Controlled-access data is not available until you have submitted the required documents and are approved by the Data Access Committee (DAC).

Controlled-access data is limited to the following:

  • All identifiable, individual-level human data.
  • Examples include demographic descriptors, phenotypic measures, 3D images, and sequencing data.

Applying for Access to Controlled Data

In order to access this data, you must follow the process outlined below:

If you have questions about the process or IRB requirement, please contact the DAC at nidcrfacebasedac@mail.nih.gov.

A. Read and complete the Data Use Certificate Agreement (DUC)

  1. Download and read the FaceBase Data Use Certification Agreement (DUC).
  2. Print the PDF and obtain signatures from all relevant personnel at your institution.

B. Complete the online Data Access Request (DAR) form

  1. Go to the Data Access Request (DAR) page and click the + Create button at the top right corner of the page (The DAR form will open in a new tab)
    • You must first login with your FaceBase User account in order to edit or start a new DAR form. If you are not registered as a FaceBase user, click on the Sign Up link at the top-right corner of the page and follow the instructions to log in through Globus and join the "FaceBase Users" group. You will receive email notification once your request is approved by the FaceBase Hub.
  2. Complete fields (1) to (14) on the DAR form
    • A red asterisk denotes the field is required to create the request. Other fields can initially be left blank and completed at a later time.
    • In fields (3) Principal Investigator and (4) Mentor or Supervisor, if you don't find the PI or Mentor names listed there, click on the + Create New button to create a new person record in the system. Then select the newly created record from the list of invertigators:
    • In fields (12) Submit a copy of the IRB letter... and (13) Submit a copy of the IRB-approved protocol... click on the Select file button to the right of each field and select the file to upload from your local file system. The files will be uploaded to the FaceBase site once you save the form.
    • Fields (14) and (15) should initially be left blank. Once you print the complete DUC and DAR forms and obtain all required signatures you must edit this form to add the signed documents to these fields..
  3. The Status field should remain "In progress (Pending Signature)".
  4. Click the Save button in the upper right corner to save all information entered in the form and upload your documents

If you are a researcher at an academic institute outside the US or if you are unfamiliar with IRBs: Please see our relevant FAQ that points you to resources at the US NIH website for more information on IRBs. For institutes outside the US, they usually have a comparable “ethics board” or something similar that can provide the necessary information. You may also contact your own university offices that deal with research on human subjects and they should provide guidance.

C. Select the Requested Datasets

  1. Scroll down to the Requested Datasets section of the page and click on the + Add Record button to open the Datasets selection page
  2. If you know details of the datasets like Title, Description, etc, you can search by entering this text in the Search all columns field at the top left of the page. To narrow your search to human-subject datasets, click on the Show filter panel link to open the filters panel
  3. Then select "Yes" on the Protected Human Subjects filter to show all datasets that contain protected human data. You can continue narrowing your search by using the other filters like Experiment Type, Gene, Syndrome, Anatomy, etc, and then pick the desired datasets from the results set shown on the right by clicking on each dataset checkbox. Once you are done picking all your datasets, click on the Save button on the top right corner of the page.
  4. The list of selected datasets will be shown under the Requested Datasets section of the DAR page. You can add new datasets to this list by repeating this process.
  5. You can remove datasets from this list by clicking on the Table mode button to the right of the Requested Datasets section and clicking on the corresponding Unlink icon

D. Print the DAR form

Once the DAR form is complete and you have selected the requested datasets, the FaceBase Hub will changed the request status to "Completed". At this point:

  1. Print the DAR form using the Print option in your browser's File menu.
  2. Obtain signatures from all relevant personnel at your institution and complete fields (16), (17) and (18) of the printed form.

E. Submit the DUC and DAR Forms

  1. Scan both the DAR and DUC signed forms into PDF format.
  2. Go back to the Data Access Request (DAR) page, log in, and click the pencil icon next to your entry.
  3. Upload the forms into fields (14) and (15) by clicking the Select file button for each field.
  4. Change the Status field (last field of the form) to "Completed" to submit your application to the FaceBase Data Access Committee (DAC).
  5. Click the Save button in the upper right corner to save your form.

Notes:

  • The encryption key does not need to be completed prior to approval.
  • If you have questions on how to obtain an IRB approval from your institution, please consult the U.S. Department of Health & Human Services' site for the Office of Human Protections (OHRP).)
  • If you are a researcher at an academic institute outside the US: Please see our relevant FAQ. For institutes outside the US, they usually have a comparable “ethics board” or something similar that can provide the necessary information. You may also contact your own university offices that deal with research on human subjects and they should provide guidance.

Instructions to create your Encryption Keys

FaceBase controlled access data must be delivered in encrypted form. We use PGP Public Key encryption, which involves the generation of an encryption key pair consisting of a Private Key file and a Public Key file. In order to encrypt the requested data, you need to submit a PGP Encryption Public Key file (see section below on how to upload that file) and keep in a secure location in your computer the private key file and the associated passphrase. Never submit your Private Key file, only the Public Key file must be uploaded.

If you already have a pair of PGP Encryption key, then you can just upload your existing Public Key file. If you don't have a PGP Encryption key pair, then follow the instructions given in this document: FaceBase Create Encription Keys Document (pdf)

Upload your Encryption Public Key

  1. Scroll down to the Encryption Public Key section of the page and click on the + Add Record button
  2. Then click on the Select file button to pick the PGP Public Encryption file from your local file system and then click Save on the top right corner of the page to upload the file
  3. At any moment you can only have one encryption key associated to a given DAR, so if you need to update you key, first delete the current entry and then add the new one
  4. You can upload your key at any moment, but need to be present once the DAR is approved so that the Hub can generate your file(s) to download

Await notification

Once your request is processed, you will be notified via email whether or not your request is approved.

Allow approximately 4-6 weeks for a response. If approved, you will have access to the human data for one year after the approval date.

Follow instructions for download

If your request is approved, after the approval email is sent out, a member of the FaceBase Hub will contact you directly to provide the data securely (i.e., you will not download the data directly from the regular website.)

If you have any questions regarding this process or need help with downloads please contact the FaceBase Help Desk via email: help AT facebase.org.