Disease specific registries

This group of registries will encompass new and pre-existing and/or amended and/or bridgehead-connected existing registries for CF, PCD, non-CF BE. These registries (CF, non-CF BE, and PCD) and possibly others will be horizontally linked with each other for benchmarking purposes etc.

These registries have been in existence and will remain outside the ERN but will be connected (will share data) with the POPULATION REGISTRY and the ERN-LUNG REGISTRY by a search broker etc.

Thus, we can make sure that no double counting occurs and best possible use can be made of the data that have been and will be collected within the ERN and outside.

Like in all registries it is of extreme importance to have patients involved in the development, governance and maintenance of such a registry.

If you are interested in contributing to this project – you do not need to have specific knowledge – fill out the contact form below:

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