EuRREB is currently creating a module for endocrine and bone complications in Langerhans Cell Histiocytosis in collaboration with the ERN-EuroBloodNet (European Reference Network on Rare Hematological Diseases). Langerhans Cell Histiocytosis is a haematological condition with manifestations in many systems. Therefore, Endo-ERN, ERN BOND and ERN-EuroBloodNet have joined efforts to collect information on this rare disease.
For this collaboration we have added a new condition group to e-REC: SYSTEMIC & RHEUMATOLOGICAL. You can already report on this condition! The condition-specific module is expected to be launched mid-2025.
Are you also interested in creating a module? What to expect: building a module can take up to one year. During this time the working group provides us with a dataset which is built into the platform and tested until it is ready to be used. Let us know via registries@lumc.nl what you have in mind, and we can have a chat about the possibilities!
You can find information about all of our active studies on our website.