With the MSDA cohort explorer, we aim to allow group level queries on harmonized datasets from multiple MS registries & cohorts to facilitate and support collaborative research. We envision to develop and implement a “federated data network”. Easily put, a federated data network allows 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.
A federated data network has several advantages:
- Data remains under the control of the data owner
- Locally required legal and ethical approvals apply
- No patient level data leaves the owner’s site, only aggregated counts, thereby ensuring patient privacy
- GDPR – ‘Privacy by Design’
- Analysis is “brought to the data” rather than creating central data repository
- Use of common data model allows for efficient search / analysis across multiple data sets
- Requires close collaboration with data owners which builds trust
We are in the process of defining the legal frame for data sharing and look forward to your input. However, some general principles are already agreed upon.
- The MSDA Cohort Explorer can only be used, for assessing the feasibility of a study and for conducting research, by bona fide research organisations and for the objective of discovering new knowledge intended for the public good and to be made publicly accessible (i.e. published)
- Data sources will always have autonomy over which data are made accessible and for which types of research, will always determine ethical acceptability and scientific validity and must be transparent about their data
- Data users must adhere to the ethical rules and privacy protection policies of each data source, may only use the data for the specific agreed research purposes and must acknowledge the sources of the data they have used.