Langerhans Cell Histiocytosis (LCH) 

The condition specific module was launched in March 2025 and is the work of the Langerhans Cell Histiocytosis Working Group.

Want to start using the module? Get access to the Core Registry and read the instructions (download, 2,4 MB) on how to use the module.

After entering the patient in the Core Registry, the LCH module appears automatically and is ready to use.

The full data dictionary can be downloaded here.

If you have questions or interest in joining the working group, please contact us on registries@lumc.nl.

The module collects the information on

• Clinical features (including the assessment of disease activity, biopsy results, genetic testing, information on organs involved);
• Medical treatment (current and previous);
• Malignancies and comorbidities

Tools used in the module

• EQ-5D-5L

Please check out our study groups overview for current studies that include data from this module. If you are interested in working with data from this module, please fill out a Data Request Form.

For more information regarding this module or other modules, please contact us at registries@lumc.nl.