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Colorectal Cancer Cohort – ADOPT BBMRI-ERIC
The colorectal cancer cohort (CRC-Cohort) was developed within the EU-funded project ADOPT BBMRI-ERIC (H2020) as a use case for piloting access to European biobanks. It was created by BBMRI-ERIC, its National Nodes and partner biobanks, and it became a permanent asset of the BBMRI-ERIC infrastructure after the end of the ADOPT project.
The collection is a long-term European endeavor, which enables existing, well-established biobanks to connect with BBMRI-ERIC and obtain increased recognition and visibility along with new users and data. Currently, the CRC-Cohort numbers over 10,000 datasets from across Europe.
The CRC-Cohort is expected to enable high-quality research and innovation to improve colorectal cancer treatment. The cohort allows for a large spectrum of research types and is therefore not restricted to any specific research question. The procedures and IT tools developed within the CRC-Cohort can be reused for similar future efforts on different disease entities implemented using BBMRI-ERIC as an infrastructure.
Additional resources
- Find the Colorectal Cancer Cohort in the BBMRI-ERIC Directory. Use of the CRC-Cohort can be requested by selecting it in the Directory and proceeding to Negotiator to request access.
- Download the handbook for biobanks to meet users’ needs for biomarker discovery, development and validation.
- Read the Data Protection Policy for the CRC-Cohort for a description of data protection measures implemented. It is intended for the data protection authorities supervising contributing partner biobanks and data protection experts in ethics committees.
- Read the article found in Nature. All citations of the cohort should cite this paper.
Access policies and procedure
The BBMRI-ERIC Access Policy also applies to access to the CRC-Cohort, with the following exception:
Step 3 of the Access Procedure in the case of the CRC-Cohort is handled directly between requester and BBMRI-ERIC.
- For controlling access to the data set, BBMRI-ERIC has an Access Committee (see Appendix I) comprising all the contributing partner biobanks, in order to ensure the due data release approvals are in place, particularly when releasing pseudonymous (personal) data.
- After the access is approved by the Access Committee, BBMRI-ERIC signs a DTA with the requester for the use of the data for the particular project. The DTA also transfers liability on the requester to ensure due data security measures when processing the data.
Setup of Access Committee
The Access Committee is comprised of the Data Manager of the CRC-Cohort, one appointed person from Common Service ELSI for the ethics check, and one medical expert on colorectal cancer nominated by BBMRI-ERIC.
Operations of Access Committee and involvement of contributing partner biobanks
The Access Committee is expected to deliver the decision within 1 month of submitting the request, based on the following procedure:
- After receiving an access request (project proposal), the Data Manager checks whether the access request conforms with the formal requirements: (a) the identity of the requester is known and their institutional affiliation is provided, (b) the request contains project description.
- If the formal requirements are fulfilled, the medical expert assesses relevance of the
project to the scope of CRC-Cohort. - If the project is within the scope, Access Committee performs Ethics Check procedure (Appendix G) (either Expedite or Full, depending on whether sufficient previous ethics vote has been provided).
- If all the previous steps conclude successfully, Access Committee asks all the contributing partner biobanks for veto of the release. If only subset of the CRC-Cohort is requested, only those partner biobanks are contacted, who actually contributed the data specifically subject to the release. The biobanks will be given 14 days for submitting the veto (so that 1 month overall for providing the Access Committee decision is achievable).