LCH-REG-DE 2013

Langerhans cell Histiocytosis

Registry

The purpose of this registry is to collect data on patients with a form of LCH that does not require treatment (stratum VI), patients with very severe forms of LCH that require salvage therapy (stratum III) or stem cell transplantation (stratum IV) and patients with neurodegenerative LCH (stratum V) as well as the respective long-term courses (stratum VII). In addition to the epidemiology, the registry should also help to better record the progression of these individual subtypes, whereby the therapy recommendations correspond to the current recommendations of the Histiocyte Society. The aim of the registry is to provide a complete epidemiological record of LCH and various subgroups in childhood and their course.

• Stratum III: "Salvage therapy" for patients with high-risk organ involvement (liver, spleen, bone marrow) who show no response to first-line therapy.
• Stratum IV: Stem cell transplantation for patients with high-risk organ involvement (liver, spleen, bone marrow) who show no response to first-line or salvage therapy
• Stratum V: Monitoring and treatment of isolated tumorous and neurodegenerative CNS-LCH
• Stratum VI: Natural course and treatment of "other" SS-LCH (patients who do not require systemic therapy at diagnosis)
• Stratum VII: Long-term follow-up

Connected to the LCH study is the Rare Histiocytosis Patient Registry, which in Germany - for the International Rare Histiocytic Disorders Registry (IRHDR) - records all cases of benign and malignant, localized or generalized diseases from the group of "non-Langerhans cell histiocytoses". It is supervised by Prof. Dr. med. Carl Friedrich Classen, University Children's and Youth Clinic Rostock (see contact below).

• Definitive diagnosis of LCH
• Age under 18 years at diagnosis
• Inclusion criteria for the respective stratum
• Signed informed consent form

• Please note the exclusion criteria for the respective stratum