Data Access Procedure

The data access process describes all the steps a researcher must go through to get access to the data, from submission of a research project to final approval and completion.

Individuals requesting access to data from the CAPACITY Registry must complete the CAPACITY Registry Data Access Request Form, including all mandatory sections and supporting documentation. This is required for the application to be reviewed by the Data Access Committee.

Create an account on the CAPACITY Mica portal.
Complete the data access request form.
Initial review of the request for completeness.
Review by the Data Access Committee.

Who Can Request Access to Data?

  • At this time, only CAPACITY members (including members of CAPACITY advisory boards and committees) and individuals from a CAPACITY-affiliated institution may request access to data from the CAPACITY Registry. A Co-Principal Investigator or Co-Investigator named on the original grant must be listed as a Co-Applicant on a request.
  • Non-CAPACITY members, students, and trainees who wish to request access to the data will need to include a CAPACITY Co-Principal Investigator or Co-Investigator as part of their data access request.

Once an application has been approved, requestors will be provided results from the Maelstrom / CAPACITY analysts or will be granted access to DataShield to run the analyses themselves. Only non-identifying, aggregated analysis results are shared. Individual level data and variables are not shared to support analyses.

Please see our Data Access Request Diagram.

Data Access Procedure

STEP 1
Creating an Account

Before initiating a request for data access, all requestors must create a user account.

STEP 2
Complete and Submit Your Data Access Request Form

A new data access request is created through the CAPACITY data access portal.

Requestors may contact the CAPACITY Research Coordinator at the Research Institute of the McGill University Health Centre (RI-MUHC) with any questions they might have, using the Contact Us.

STEP 3
Tracking Your Request

Following submission of a data access request form, the CAPACITY Coordinator will review the request, ensure all mandatory sections are completed and necessary documents uploaded, and then submit the request to the Data Access Committee for review. If something is missing, the coordinator will follow up with the requestor. All communication occurs through the CAPACITY data access portal.

Requestors can track the progress and history of their requests online by visiting the CAPACITY data access portal and selecting their data access request. The dashboard summarizes the status and any required actions. A notification will be sent upon approval or rejection of the submitted project.

STEP 4
Signing the CAPACITY Data Access Agreement

After the CAPACITY Data Access Committee has approved a data access request, a CAPACITY Co-Principal Investigator or Co-Investigator will need to sign a 1-page form. Their signature will confirm that:

  • They have reviewed the scope and requirements of the project, and agree to serve as the Primary Requestor and/or Project Supervisor.
  • They understand that they are responsible for overseeing the project's progress, ensuring alignment with CAPACITY objectives, and serving as the main point of contact for all related communications.
STEP 5
Getting Access to DataSHIELD/DataSHIELD Results

If the request involves analyses conducted by the Maelstrom analysis team, the results will be sent to the requestor once completed. If the request is for DataSHIELD access for requestors to perform own analyses, the necessary credentials will be provided.

STEP 6
Project Progress and Amendments

Once approved, the title of the project, name(s) of the approved requestor(s) and their credentials, name(s) of the approved institution(s), and a lay project summary will be added to the Approved Projects page on the corporate CAPACITY Registry website.

If changes are made to the original, approved application, an Access Request Amendment Form will need to be completed before any changes are implemented. All amendments should include changes that are within the scope of the original project. The CAPACITY Coordinator will ensure that all mandatory sections have been completed and necessary documents uploaded, and then submit the request to the Data Access Committee for review. Examples of changes include:

  • Addition of new data variables
  • Changes to the date range of data requested
  • Changes to the data retention dates
  • Changes to the cohort definition
  • The addition or removal of project team members *

* Minor amendments, including changes to project members, or changes not directly involving CAPACITY Registry data, may be considered for expedited review.

Criteria for Approval

  • The objectives of the project submitted are in accordance with the guiding principles and objectives of the CAPACITY Registry, which are to enable benchmarking and research in pediatric diabetes across Canada to improve care outcomes, and to identify and address outcome disparities.
  • All necessary documentation has been received.
  • Maelstrom (Research Institute of the McGill University Health Centre (RI-MUHC)) has confirmed the feasibility of the request.
  • For research projects:
    • Proof of REB approval, or justification for REB exemption, has been provided.
    • Research has been deemed scientifically sound and the project scope is appropriate.
  • For quality improvement projects
    • Proof of QI approval.

If data elements deemed sensitive are requested (e.g., ethnicity), specific justification is required. Justification provided within the REB-approved protocol or QI-approved protocol is sufficient.

Additional Resources