Registries
The results of our surveys of MEN patients and discussions with them and their families have shown that a large number of respondents would be happy to make their data available for research purposes. However, this option is not always clearly indicated and therefore often remains unused. It is therefore our task to increase information and awareness about the registers. Providing this information is essential for improving the care of MEN patients and developing biomarkers for the prognosis of tumours and recurrences.
The Registry for Rare Endocrine Diseases (EuRRECa) and the European Reference Network for Rare Endocrine Diseases (Endo ERN) are taking up this challenge and working to improve care across Europe.
In Germany the MEN register is available.