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Support for Cohort and Longitudinal Follow-up Studies

This workflow outlines the process by which a researcher requests a cohort list of applicable individuals defined for the purposes of conducting publicly-funded research that cannot reasonably be conducted within ICES. Provision of a cohort list will be for the following purposes only, subject to ICES’ review and approval: (1) to enable abstraction of examination of data from existing data sources including but not limited to medical records, disease registries, human biological materials or genetic databases, and; (2) to contact physicians or institutions/providers for the purposes of recruitment in research.
ICES Data Process Requestor |  ICES Data process  DAS staff

Step 1 - The Requestor submits DAS Cohort List Request Form to

The Requestor must be a publicly funded, not-for-profit researcher, student, organization, policy maker or decision maker. The Requestor must specify the purpose of the project – academic publication, inform policymakers, report, etc. – and the intended audience. A request form should be submitted.

Step 2 - ICES DAS assesses eligibility and project feasibility. If acceptable, the Requestor is invited to a consultation to review project objectives and timelines.

Upon submission, ICES will assess eligibility and project feasibility. If feasible and eligible for services, a consultation will be scheduled.

Step 3 - During the consultation, ICES DAS will gather information to develop a preliminary project plan. Following the consultation, ICES DAS will provide the Requestor with a Confirmation of Feasibility that includes a cost estimate of the services requested.

The DAS team consults with the Requestor to develop a preliminary project plan. This consultation process (up to ten hours) will gather information on the following:

  • Project personnel: Specify the principal investigator and any analysts or research coordinators who are part of the project team.
  • Direct personal identifiers: Specify the direct personal identifiers minimally required to carry out the research project and purpose.
  • Datasets required: Identify the datasets and dates that will need to be used to answer the research question.
  • Resources required: Specify whether the project will require support from analysts, epidemiologists, project manager, scientist, etc.
  • Timeline: Specify the proposed timeline for the project and whether there are deadlines to meet (funding end dates, year-end reports, etc.).

Step 4 - The Requestor seeks research ethics board approval for the project and satisfies any other conditions that must be met prior to project initiation, as specified in the Confirmation of Feasibility.

ICES DAS will provide the Requestor with a proposed project plan, high-level dataset project plan and cost estimate based on the consultation. The letter of support accompanying the Confirmation of Feasibility will include conditions that must be met by the Requestor before project work can begin (examples include confirmation of public funding, copy of submission and written decision of a research ethics board). If funding is being sought, the letter of support can be submitted to granting agencies for applications.

Step 5 - The ICES Privacy Office reviews the submission to the research ethics board and corresponding approval.

Upon approval, the Requestor submits to ICES DAS a copy of their REB application, approval and completed Confirmation of Feasibility for review. ICES Privacy requires evidence that the completed Confirmation of Feasibility has been submitted as a part of the REB application – approval letter from an institutional REB typically lists the documents that have been submitted, and this type of approval letter is sufficient.

Step 6 - ICES DAS provides the Requestor the DAS Agreement for signature.

When ICES Privacy is satisfied that the Requestor has met all the requirements of project initiation, ICES DAS will issue the DAS Agreement for review and signature. The DAS Agreement outlines the terms and conditions for provision and estimated cost of the services. Members of the Requestor’s project team will be required to sign a Confidentiality Agreement, to be considered Authorized Researchers.

If the project scope, time or funding availability has been modified since the first consultation (Step 2), the Requestor will be invited to another consultation. A revised project plan and, or, cost estimate may be provided as a result of the changes.

For projects requesting importation of external data to ICES, a data sharing agreement will be negotiated as part of the DAS Agreement specifying the data custodian, location of data, transfer schedule and data destruction upon linkage to ICES Data.

Following signature, ICES Finance will invoice the Requestor for services as per payment schedule negotiated within the DAS Agreement.

Step 7 - ICES DAS and the Requestor’s team develop and finalize the data set creation plan.

Information from the consultation(s) with DAS and project proposal will be used to put together the data set creation plan outlining in detail, the Requestor's data requirements (specific data sets, data timeframes, variables, covariates, etc.). The data set creation plan must be approved by the Requestor prior to the ICES Analyst beginning creation of the data set.

Step 8 - ICES DAS creates the data set and files are passed to ICES Information Management to decode the approved encoded variables

ICES Information Management will verify that the personally identifiable information, including direct personal identifiers contained in the cohort list are consistent with those listed in the executed DAS Agreement. Once verified, the approved encoded variables will be decoded and added to the cohort list.

Step 9 - ICES Information Management will transfer the cohort list to the Requestor as per method outlined in the DAS Agreement.

The cohort list, including the direct personal identifiers, will be provided to the Requestor using a secure method of transfer, as outlined in the DAS Agreement.