Registries
Registries that collect themselves
- Entered once, during care
- Governance named
- A society or a sponsor can start one
Entered once, during care. The registry is a view of the pathway, not a second data-entry burden. That is why it is still current in year three.
11 centres
in the multiple sclerosis registry
Society owned
the definition is never ours
How the model works
A view, not a second entry
The registry reads the resources the pathway already produces. Nothing is typed twice.
Governance is named
Who runs it, which centres contribute, the scientific committee. It is what a sponsor checks first.
Who owns what
The record stays the provider's. The definition is the society's. The anonymised view is what a sponsor accesses under a permit.
How one starts
A society defines the variables, the centres agree, the pathway is instrumented. The registry exists from the first patient.
Registries today
Who owns the definition, which centres contribute, how many patients are in each.
- The Slovak multicentre multiple sclerosis registry: the reference implementation.
| Registry | Owner of the definition | Centres | Patients | Status |
|---|---|---|---|---|
| Slovak multicentre multiple sclerosis registry | The national neurological society | 11 | 3,900 | |
| Dementia registry, Slovakia | Society definition in preparation | 2 | 1,450 | |
| Colorectal outcomes registry | Society definition in preparation | 3 | 1,120 | |
| Cardiac ablation registry | Definition under review | 1 | 640 |
What societies and sponsors ask
The society that defines it owns the definition; the providers own their records; access to the anonymised view is governed by the scientific committee and, for secondary use, by a permit.
Because they are a second data-entry job. A pathway-based registry has no second job.
Through the named governance and, from 26 March 2029, through the Health Data Access Body permit route under Regulation (EU) 2025/327.
Monthly briefing
The signal, once a month.
What changed in European health data, what we shipped, and what it means for a provider. Nothing else.