Our colleagues in the European Registries for Rare Endocrine and Bone Conditions (EuRREB) are excited to announce that the Langerhans Cell Histiocytosis (LCH) module is now live on the Core Registry platform.

This condition-specific module activates automatically once a patient with LCH is entered into the system- making data collection seamless and efficient.

What does the module include?

• Clincial features (disease activity, biopsy results, genetic testing, organ improvement)
• Medical treatment (past and current)
• Malignancies & comorbidities
• Patient-reported outcomes via EQ-5D

The full data dictionary is available for download and more information can be found at the EuRREB website.

Point to note: There is a dedicated module for non-Langerhans Cell Histiocytosis cases too!

Lastly, EuRREB has launched a new study on Chronic Non-bacterial Osteitis (CNO) in adults – a rare and often under-recognized autoinflammatory bone disease. Led by Dr. Liesbeth Winter (LUMC), the study introduces a Condition Specific Module to collect standardised clinical data across countries. While CNO is more commonly recognised in children, this study focuses on improving diagnosis and care for adult patients. Researchers from Europe and Brazil are goinging forces to better understand long-term outcomes and treatment options.

You can checkout an overview of all studies on the EuRREB website.