True to the motto “Not the patient, the expertise should travel” the European Reference Network for Rare Lung Diseases (ERN-LUNG) starts a Population Registry.
More than 7,000 different rare diseases are known throughout Europe. Some of these affect a few thousand people, or only a few patients. The problem with this is: too little known about the respective clinical picture and/or experts are not easy to find. These issues should be changed by the Population Registry.
What is the Population Registry?
The Population Registry is an international Registry that records as many people as possible that are affected by rare lung diseases.
How can the Population Registry be used by Patients?
Patients or relatives can register themselves and enter medical data (General Data Protection Regulation (GDPR) respected). As soon as a patient enters his data a defined group of experts will be informed about the new registration. Now they can contact the patient via an e-mail function in the Population Registry.
Link to registration: https://ern-lung-population-registry.mig-frankfurt.de/
The Population Registry therefore enables disease-specific registries to learn about and benefit from previously unknown patients.
Who are the Contact Persons for the Population Registry?
If you have any requests you can contact the Population Registry Team via firstname.lastname@example.org