Toolbox Strategic Focus Area 3
Develop a federated data network to allow group level queries on harmonized datasets
With the “MSDA cohort explorer”, the MSDA aims to allow simple group level queries on harmonized datasets from multiple MS registries & cohorts to enable feasibility studies for clinical trials as well as collaborative research projects. The MSDA cohort explorer will allow to assess whether registries and cohorts are “fit-for-purpose” for a specific research questions.
The MSDA envisions to develop and implement a “federated data network”: a federated data network allowing local querying of different cohorts or registries (=data does not leave the local storage unit), but the aggregated data is combined in a central platform. The end-user only works on aggregated metadata and is not able to see raw data let alone patient-level data.
The MSDA aims to define a technical architecture and legal frame that is custodian driven. Several one-on-one discussions with registry custodians were done during 2019. The MSDA aims to continue these efforts during 2020 and beyond.