Registries
Registries that collect themselves
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.
- Entered once, during care
- Governance named
- A society or a sponsor can start one
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
Who owns the registry?
Why do registries get abandoned?
How does a sponsor access it?
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.