The main objectives of WP6 are 1) to link reusable data from different data sources with the NHR registry and 2) to make the national HF registry interoperable with other HF registries, electronic patient records and international initiatives through a common data model.
- The primary activity of WP6 is investigating the potential linkage of the national HF registry with different data sources for registry-based research. The first goal of WP6 is to set up sustainable data linkage agreements with at least one data source to enrich the NHR in the first year of the HEART4DATA consortium. In the first phase we will set up data linkage agreements with PHARMO and CBS. In the first year we will conduct a pilot study embedded in project A to assess the possibility of data linkage with PHARMO. During the pilot study a decision model will be made to agree upon data pairing, data cleaning and linkage quality.
- The second aim is to embed titration studies within the NHR using PHARMO linkage. In the following years sustainable data linkage agreements, following the same principle as linking with CBS and PHARMO, with other data sources will be established. Therefore, the legal, financial and logistic part for linkage with these specific data sources should be investigated.
- In addition, this work package will work on mapping data from different sources with common data models for comparative research on both national and international level. A common data model is a model to harmonise data between different data sources in a common, standard format.
- Lastly, in phase 2 we will create a working plan for federated data. Together with Health-RI and other national initiatives such as SKR, we will create a strategy for federated data analysis.
- 22 june 2023: Data linkage CBS realised. Press release: NHR & CBS combine forces
Evelien van de Schaaf
Health-RI / Durrer Center
Aiara Lobo Gomos