Access Process

• Data and biological samples are accessible to people carrying out research activities in the academic, public and private sectors.

• The approval of the Research Ethics Board (REB) of the researcher's institution is required before submitting an access request.

• Data and biological samples must be used in a way that respects the dignity and privacy of participants. Researchers must not be able to identify participants.

• The researcher must inform CARTaGENE immediately of any threat to confidentiality or security of data or biological samples, or of any significant change in the project.

• Access is limited to a specific, approved project and may not be used for commercial purposes by insurance companies or employers.

• Any changes to the project after approval must be validated by the Sample and Data Access Committee (SDAC).

• Submit a request via the SDAS portal .

• The access office evaluates the feasibility of the project and checks the availability of data and samples.

• If feasible, the request is forwarded to the SDAC for evaluation.

• Once the access request is approved, the researcher can access the data and samples under the terms of the Access contract.

Documents required for an access request:

• Completed application form (online)

• Research protocol

• REB approval letter

• CV

The SDAC is an independent committee of seven external members. The SDAC evaluates applications on the basis of scientific quality, data security and compatibility with CARTaGENE's objectives. The committee meets four times a year to evaluate projects. The SDAC may process certain simple applications under a fast-track procedure. In such cases, decisions are communicated within two weeks.

The SDAC committee will not evaluate the access request if the project has not been approved by a REB (exemptions are not recognized by the CHU Sainte-Justine ethics committee).

On the Documents page, you will find, among other things:

• Consent forms signed by participants

• Access policy

• Access contract

• Questionnaires

Access to administrative health data by researchers requires approval from data custodians (RAMQ, MSSS, ISQ). Approval can be obtained by submitting a request via the ISQ zone recherche portal (in French only). CARTaGENE handles access submission for researchers.

To access CANUE environmental exposure data, you must sign the CANUE - Data Use and Sharing via Third Party Agreement.

For further details, please contact the access office .

An annual report detailing the progress of the project, as well as a final report at the end of the project, are required. The researcher must inform CARTaGENE of the project’s results and is encouraged to publish, mentioning the origin of the data and biological samples. A copy of the manuscript must be submitted to CARTaGENE before publication for review for potential risk of identification of a participant. Derived data from the project must be returned to CARTaGENE in accordance with the Access contract and will be integrated into the database. If necessary, a moratorium (12 months) may be granted to protect intellectual property before results are released. In addition, a summary of the results in accessible language must be provided for public dissemination.

Fees are charged for processing requests, evaluating them, and preparing and extracting data or biological samples. The access fees are defined in the Access contract. The costs of delivery of biological samples are not included and will be charged separately by the biobank.

Access fees for researchers from the public sector

* A 50% reduction in data fees is granted to Quebec academic early-career researchers (first independent position within the last 5 years).