As data becomes increasingly electronic, requirements for data security and consensus on standards is paramount. There is an ever-evolving need to integrate data from research studies with information collected during routine clinical care, and multi-site studies and teams of investigators require support systems to ensure the uniform quality of data. In addition, there is a need to share data internationally in order to determine genomic associations with disease risk and pathogenesis. MICYRN is working to address these issues by facilitating the development of a national hub and spoke informatics platform for Canadian investigators and teams affiliated with MICYRN institutions. The network has developed a consistent, comprehensive informatics infrastructure with a focus on an integrated e-platform of informatics tools that meet diverse needs of the clinician and investigator community, including capture of patient-reported outcomes. Currently, we are collaborating on initiatives to improve guidance for the access, transmission, storage, analysis, linking and sharing of research data.

REDCap®

REDCap® (Research Electronic Data Capture; Vanderbilt University) provides an affordable, safe, easy-to-use, web-accessible software that is validated and compliant with regulatory standards. REDCap® installations are now established at the majority of MICYRN member sites, linked through the CRI working group. To support investigator-initiated clinical trials, MICYRN has established a version of REDCap® subjected to extensive validation and maintained in an environment that meets requirements for data management in regulated clinical trials. The shared resource model allows both the distribution of work required to maintain the system, as well as collaboration that would otherwise be difficult and costly for a single site to run and maintain. Increasingly, investigators and teams want to share data between projects, both nationally and internationally, as well as be able to link and integrate data in one system with others. Thus, there is a need for tools that can harmonize, link or integrate data across different informatics platforms, not only within the research world, but also with hospital and community clinical information systems and electronic health records. MICYRN is developing a number of tactics to provide support in these areas.