Skip to content
Non-Langerhans Cell Histiocytosis (non-LCH)

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

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

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

The full data dictionary can be downloaded here. 

This module covers

  • Erdheim-Chester disease (ORPHA35687) 
  • Rosaï-Dorfman disease (ORPHA158014) 
  • Other sub-types could be reported as non-LCH (ORPHA157987) 

This module collects 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

    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.

    If you have any questions or interest in joining the Working Group, please contact us at registries@lumc.nl