Support for Cohort & Longitudinal Follow-up Studies

The Requestor submits the DAS Cohort List Request Form.

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 policy makers, report, etc. – and the intended audience. A request form should be submitted.

ICES DAS assesses the project.

If acceptable, the Requestor is invited to a consultation to review the project.

Upon submission, the DAS team will assess project feasibility and timelines. The Requestor will be contacted within two full business days of submission of the DAS Cohort List Request Form. If feasible and eligible for services, a consultation to review the project objectives and timelines will be scheduled.

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. ICES DAS will also request a named individual who will require access to the virtual data environment: this person should be experienced in using statistical software (SAS, Stata or R) to analyze large data sets.
• Type of Study: Specify whether the project is a cohort or case-control study. If cohort, has the cohort already been created or is cohort development required? If it is a longitudinal study, identify which changes over time are of interest (examples: residential changes, coding changes).
• Index Event, Variables & Covariates: Identify the index event, age, sex and any other required demographic or geographic data. Specify any comorbidities and additional covariates.
• Data Sets Required: Identify the data sets and dates that will be needed to answer the research question.
• Types of Analytical Methods: Identify the analysis plan. Specify if existing data fields can be used or whether fields need to be derived. If there is a named analyst on the project team, are they familiar with the analytic methods that are required?
• Disease & Procedure Codes: Specify any classification codes that will be used in the study.
• Resources Required: Specify whether the project will require support from analysts, epidemiologists, scientists, project manager, etc.
• Timeline: Specify the proposed timeline for the project and whether there are deadlines to meet (funding end dates, year-end reports, etc.).

The Requestor reviews Confirmation of Feasibility for accuracy and provides ICES DAS with approval to move forward with project initiation.

ICES DAS will provide the Requestor with a proposed project plan, high-level data set project plan and cost estimate based on the consultation. The letter of support accompanying the Confirmation of Feasibility will include any conditions that must be met by the Requestor before project work can begin (including confirmation of public funding). If funding is being sought, the letter of support can be submitted to granting agencies for applications. When the Requestor has confirmed funding, they will contact ICES DAS to initiate the project.

ICES DAS submits project initiation documents for ICES Privacy to review and approve.

ICES Privacy will review the ICES Project Privacy Impact Assessment (PIA) submitted by ICES DAS. ICES Privacy will advise and inform the project team of any further requirements which need to be met prior to project approval.

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

ICES DAS provides the Requestor with 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.

ICES DAS works with the Requestor to develop and finalize the Dataset Creation Plan.

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

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.

ICES Information Management will transfer the cohort list to the Requestor as per the 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.

Any publications resulting from the work must include all applicable acknowledgments. Please refer to the Publication Guidelines for DAS Third Party Research (TPR) document and the ICES Data Dictionary for all the details.

If you have questions about ICES DAS, please email or call us at 1-888-480-1327 (toll-free).