The medical guidelines for childhood LCH have been published in Pediatric Blood & Cancer  (PBC), Wiley Online Library.

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An­nu­al in­ter­na­tio­nal con­fe­rence of sci­en­tists, pa­tho­lo­gists and cli­ni­ci­ans discussing histiocytoses and their backgrounds. More ...
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European Union Clinical Trials Register of the European Medicines Agency

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European Clinical Trials Database of the European Medicines Agency

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Rare diseases in EU
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Purpose and Restrictions

Author(s): Euro Histio Net Work Group for LCH Guidelines (see introduction page), Created: 2011/03/09, last update: 2012/01/23

The guidelines detailed herein have been developed for use as recommended practices in the evaluation and treatment of children (up to 18 y.) not formally enrolled in cooperative national or international studies or clinical trials. (For study and trial protocols see and They are intended for physicians and other health care providers from the following medical fields: dermatology, gastroenterology, haematology, hepatology, immunology, internal medicine, oncology, otolaryngology, pneumology, and radiology.

Webpage of the international medical society for histiocytic disorders "Histiocyte Society"

Please note that these guidelines are based on the best available evidence from clinical research, on extensive and systematic literature review, and on expert opinions. They are intended to provide guidance in order to improve diagnosis, clinical work-up, and treatment. The recommendations cannot replace the physician’s own professional judgment based on the patient’s special clinical circumstances. Due to the diversity of clinical course of LCH, even recommendations which are established as standard of care may need to be critically appraised in an individual case. We suggest that you never hesitate to contact LCH experts in case that the clinical course raises questions or doubts. Whenever possible patients should be enrolled in ongoing clinical trials.

In LCH like in other rare diseases, research questions are rarely addressed in prospective studies of adequate designs and high quality. Therefore, available data are insufficient and not necessarily consistent. In some circumstances as clinical presentation and clinical course of the disease, data are evidence based, but the evidence on some aspects of LCH, like clinical work-up and therapeutic strategies, is still limited and mostly based on expert opinion. Based on the mentioned considerations, these guidelines report the level of agreement between experts (see Table 1 below).


Determination of the Level of Agreement




According evidence and/or general agreement


Discussed evidence and/or discussed recommendation, but no strong objections


Conflicting evidence and/or divergence of opinion