Requesting Access
Many studies within the AD Knowledge Portal contain controlled access data. To access this data, you must submit an electronic data access request, including a Data Use Certificate (DUC).
Some key things to know about Access Requests:
Each request only covers the submitter and their collaborators at the same institution. If you have collaborators at another institution, they will need to submit a separate request.
To add any new collaborators or team members, you need to update both the DUC and your electronic data access request list of collaborators.
Approved access requests will enable 1 year of access. You must submit a renewal access request each year in order to maintain access.. Expected data access request review time is generally one to two weeks. We recommend submitting your renewal request well in advance of your expiration date.
ā¯—Please note: There is a new version of the data use certificate (DUC) reflecting our compliance with NIH guidance, specifically:
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Elements & Requirements of an Access Request:
All Access Request fields must be complete and follow the requirements below.
Screen 1: Basic Information
Screen 1:
The Access Request instructions are reiterated on the right side of the page for quick reference. Please read through and follow these instructions carefully.
Provide the First and Last Name of the person serving as the lead or principal investigator (PI) of the research project you are going to conduct using AD Knowledge Portal Data.
Provide the full, unabbreviated name of your institution. The full name is required for verification. Note: each request can only be made for a single institution.
Describe your Intended Data Use for the AD Knowledge Portal Data. This statement must meet the following requirements:
Must be 1-3 paragraphs in length describing:
The objectives of the proposed use (what do you want to do?)
The study design (how will the study be conducted?)
The analysis plan (how will the Data be analyzed?)
You must include the list of the AD Knowledge Portal studies you intend to access and use. You can find the list of available studies by exploring the AD Knowledge Portal Studies page here.
Screen 2: Request Reminders
Screen 2 of the request process provides a list of common reasons requests are rejected and gives the option go back to Screen 1 to double-check your own submission.
Screen 3: Data Requesters and DUC
Screen 3:
Provide a complete list of all users (at the same institution) who should have access to the data. Note that this list must match exactly with the list provided in the DUC.
You may download a copy of the current DUC template. If you are preparing your DUC in advance, you may access the template here.
Upload your completed DUC.
Before submitting a DUC:
Please be aware that if you submit an Access Request on behalf of your research group, you will be responsible for submitting all changes and annual renewal requests on behalf of your group. Access requests cannot be transferred from the original submitter to another user. Furthermore, Sage Bionetworks cannot submit any updates or progress reports on behalf of a user. If the original submitter is unable to make the required updates or progress reports, a new Access Request must be submitted by another individual in the group.
Completing the DUC:
Click here to access the DUC form, which you can download and print. Note that the content of the DUC is non-negotiable - no changes are allowed.
Using the DUC, gather Synapse usernames and signatures from all the team members at your institution who will need access to the data. The DUC may not include team members from other institutions.
Signing Official Signature: A signing official is someone from your organization who can speak to your affiliation and has good standing within the organization. Have this official review and sign the DUC. Note: you cannot serve as your own signing official and the signing official cannot be a user listed on the Access Request.
We will accept the following types of signatures:
A scan of a paper DUC signed with ink signatures.
Industry-accepted electronic signature methods.
Visit the AD Knowledge Portal DUC page and click "Request Access" to complete the data access request process, which includes submitting your IDU and uploading the signed DUC form.
Expected review time of a data access request is one to two weeks. Once approved, data may be downloaded and accessed for one year, at which point a renewal is required to maintain access to the data.
To add new team members to an existing request:
*Note that this can only be done by the Synapse user who initially submitted the request. If the original submitter is not available to perform the update, a new access request must be submitted.
Check the document version of your existing DUC to ensure that it matches the most current DUC template document version; the most current version of the DUC template can be found here.
If you are using the current DUC version, you may simply add the new team members to the existing DUC. Please be sure to add them to the electronic list of data requesters as well (screen 3).
If your existing DUC is an older version of the document, you must complete and submit the latest version of the DUC; you cannot submit a request using an outdated version of the DUC.
Gather Synapse usernames and signatures from all the new collaborators at your institution who will need access to the data.
To revoke access of any collaborators, their names should be clearly struck from or removed from the form.
Click Update Request.
Verify the content in the request is accurate. If your intended data uses have changed, you must update them. If the studies you expect to access have changed, you must update the study list.
Ensure that the data requesters listed on Screen 3 of the electronic data access request process matches the list on the DUC exactly.
Complete the online data access request process by uploading the updated DUC and clicking submit.
To complete the annual renewal:
You must submit an annual access renewal in advance of the expiration date and allow adequate time for review. The request submitter will receive two email reminders to renew data access before the expiration date. Follow the instructions in the reminder email or click on the link provided to go to the AD Knowledge Portal Access Request. Click Update Request to begin the access renewal. Please ensure you update the following in your renewal request:
Check the document version of your existing DUC form to ensure that it matches the most current DUC template document version; the most current version of the DUC template can be found here.
If you are using the current DUC version, you may proceed with the previously signed version.
If your existing DUC is an older version of the document, you must complete and submit the latest version of the DUC; you cannot renew using an outdated version of the DUC.
Remove any collaborators who no longer need data access from the Data Requesters list on Screen 3 and clearly strike or remove the collaborators from the DUC.
Add any new collaborators to both the Data Requesters list on Screen 3 and the DUC. Ensure the new collaborators have signed the DUC.
Update your Intended Data Use statement to reflect your progress since your last access request. If your intended data uses have changed, you must update them. If the studies you expect to access have changed, you must update the study list.
You will receive an email approximately one to two weeks of request submission indicating whether your renewal has been approved or rejected. Once approved, data access will renew for everyone listed within the submission for one year.
To request additional DUC support:
If you still have questions or issues related to a DUC, please contact our Access & Compliance Team (ACT). You can use any of the following methods to contact the ACT:
Use the Access & Compliance Team portal
Email the team at act@sagebionetworks.org