BREATHeREGISTRY

BREATHeREGISTRY, previously known as the population registry, is a patient driven registry and provides the possibility to add patient recorded data. Thomas O.F. Wagner, MD, Professor of Internal medicine, medical director of the Frankfurt Reference Center for Rare Diseases (FRZSE) at the Universitätsklinikum Frankfurt, is the coordinator of the ERN-LUNG consortium, a group of the most renowned experts in that field in all European countries. He sees a great opportunity in the register: “Patient registries are important instruments for supporting clinical research in the field of rare diseases and thus improving healthcare in the long term. With the help of the European Population Registry, we are taking an important step towards better caring for patients in the future”. The BREATHeREGISTRY is registered in the European Rare Disease Registries Infrastructure.

Objectives of BREATHeREGISTRY

The population registry collects data from patients affected by rare diseases directly, irrespective of whether they are seen either in the ERN-LUNG member Health care Providers 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.

Overall, this registry serves as a valuable resource for:

Understanding rare diseases: By gathering information from patients’ descriptions, specialists can examine trends among many rare diseases, finding commonalities and distinctions. This can direct the development of new drugs, therapies, and diagnostic techniques.

Tracking Patterns: Experts can comprehend disease progression, treatment outcomes, and patient demographics by referring to the patient’s statement of their symptoms. The age at which a condition first manifests, how the disease progresses over time, hereditary variances, and co-occurring conditions are typical patterns.

Identifying Research needs: Researchers can identify knowledge gaps thanks to data analysis. To illustrate a few:  

• Are there undiagnosed patients within the population?
• Are there groups of patients who require customised interventions?
• Are there specific rare diseases that lack effective treatments?

The common data elements in BREATHeREGISTRY can be found here.

The BREATHeREGISTRY can be accessed here and is available in English, German and French.