The objective of this work package 5 is to create an operable IT infrastructure for registry-based research. Activities:
- The IT infrastructure will be embedded within the NHR using the NHR registries
- Education modules should be developed about using the IT infrastructure
- An expert group with cardiologists, researchers, nurses and data managers should be composed for testing the different components of the infrastructure.
- Different data sources for gathering the (additional) registry-based data can be used, like bulk uploads from the EHR, manual eCRFs within the NHR or eCRFs from external parties.
- For data linkage with data from external sources, such as PHARMO or DHD, bulk uploads will be facilitated or data will be forwarded.
- Gathering data about PROMs and PREMs of patients is one of the other important topics within this work package.
- One of the activities within this work package is reducing the data registration burden in the hospitals through enabling bulk uploads from the different EHR systems within the hospitals.
- A public dashboard for publishing generic data in collaboration with Hart & Vaatcijfers and a portal for researchers to apply for data will be developed together with the DCVA infrastructure pillar.
Achievements & Milestones
- Mergetool for dataflow from TITRATE-HF to NHR HF registry
- 22 may 2023: Reached 2000 included patients thanks to synergie with TITRATE-HF