As part of its ongoing breast cancer research efforts, the National Institutes of Health’s (NIH) National Cancer Institute (NCI) is partnering with Queen’s University Belfast to help manage NIH’s research data.
The research resource will be part of the Confluence Project, which is aiming to build a large research resource for the scientific community by 2021 for studying the genetic architecture of breast cancer. The resource will include at least 300,000 breast cancer cases and 300,000 controls of different races/ethnicities.
As part of the project, NCI is working with Queen’s University Belfast, which is developing the Male Breast Cancer Consortium (MBCC). The MBCC will serve as the largest consortium of epidemiological and clinical studies dedicated to studying breast cancer among males.
Queen’s University aid NCI by contacting institutions with existing studies on male breast cancer to discuss the inclusion of their data in the Confluence project, collecting study information and data, setting up data transfer agreements, and performing data management, storage, and access services. The university will also assist NCI with developing a secure cloud-hosted data platform.
NCI chose to partner with Queen’s University because the MBCC is the only consortium dedicated to the study of male breast cancer. Since the MBCC is housed at Queen’s University Belfast, the university has data governance over the data contributed by the individual studies to MBCC, which NCI requires.
During the partnership, Queen’s University will:
- Collect and harmonize data (e.g. core data, risk factors, pathology, treatment, and survival) that is contributed to the Confluence project from studies with cases of male breast cancer.
- Manage data access after approval by the Data Access Coordinating Committee (DACC) for the male breast cancer studies.
- Work with NCI to evaluate the feasibility and subsequent use of a secure Cloud-hosted Data Platform for data submission, management, access, documentation, harmonization, and analyses by Queen’s University Belfast.
- Develop an alternative plan on how Queen’s University would provide efficient and secure data management, storage, and access services through its Institution if the preferred Cloud-hosted Data Platform is not feasible.
- Produce four progress reports during the periods of performance. For each progress report, the NCI will provide Queen’s University with a template requesting specific updates regarding the deliverables of progress reports that will be completed by the university to inform NCI of progress on deliverables.