KI e-Health Core Facility Tryggve2 Use Case – Joint Nordic Colorectal Cancer project
The Joint Nordic Colorectal Cancer project is a NordForsk funded project that investigates barriers (and possible remedies) to joint Nordic studies using multicountry samples and healthdata in a real use case that aims to study biomarkers of and etiology of colorectal cancer etiology and treatment success.
One of the major problems encountered has been the lack of an efficient technology for storage, handling and sharing of data for joint Nordic studies.
The following data has arisen during the course of the Nordic CRC project.
- heredity analysis of CRC: linkages of multigeneration registries and cancer registries to identify individuals with hereditary risk for CRC.
- SNPs testing, large joint Nordic case-control study of CRC.
- WGS of subjects with hereditary risk for CRC (see i).
- ontological mapping of cancer registries/CRC clinical registries, Sweden/Estonia/Norway/Iceland/Denmark/Finland
The first step is to perform an efficient and safe uploading to the ePouta platform at CSC Finland, to explore how to transfer large amounts of personal data between Nordic countries.
Another aim is to establish a method for inspection of uploaded metadata, where investigators interested in applying for access can browse what data has been uploaded. This requires a substantial amount of work on ontologies and how to extract data from identifiable files to an open metadata analysis workspace. A solution building on the previously successfully developed system of www.biobanks.dkis envisaged. For metadata generation, useful open source software is for example the MIABIS Mapper (https://github.com/MIABIS/miabis-mapper), The MIABIS Mapper contains 36 variables related to the characteristics of a biobank, and could be adapted to cancer registry variables, grouped by patient, diagnosis and treatment. The output would be openly presented “Common Variables”for research planning to enable filing of ethical applications and other necessary permissions.
Data transfers for linkages of heredity analysis of CRC patients with genomic results have high scientific value since they can lead to better screening and treatment of cancer patients. The Nordic relevance is high, because the data transfers make use of Nordic registries and stored biospecimens in an innovative way.