POPULATION REGISTRY of all rare respiratory diseases
This again is a new registry of all rare respiratory disease patients, making use of the basic data set. The registry is patient driven and will provide the possibility to add patient recorded data.
The new POPULATION REGISTRY is collecting data from patients directly, irrespective of the fact whether they are seen either in the ERN-LUNG member HCPs or in any other highly specialized institution. This offers access to patients otherwise not reached especially since patient self-recording of the data will be encouraged.
Thus, we expect to get access to patient data of those affected from a specific rare disease but not otherwise linked to any of the HCPs involved in ERN-LUNG, nor in any of the other registries.
By asking patients and/or relatives to consent to registration and use of the data we hope to attract new patients to self-register in the POPULATION REGISTRY and closing the gap of knowledge conc. the number of patients affected.
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: