We have started several projects that aim to understand which patient / disease registries have the ability to be used in outcomes research. Even though the title would imply a broader perspective, our current focus is to understand which patient / disease specific registries exist throughout Europe.
From our initial research, we have found that it is challenging to identify which registries exist. In our data-base we currently have 470 registries in Europe compared to 213 in the “Patient registries of Europe” database.
We are currently addressing the following disease areas:
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- Diabetes
- Heart failure
- Heart valve surgery
- Kidney cancer
- Liver cancer
- Rheumatoid arthritis
- Stroke
This is an overview of how many specific registries (including sub-registries) we have found per country (excluding company sponsored registries):
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