LCH-REG-DE 2013

Author:  Julia Dobke, Last modification: 2024/08/28 https://kinderkrebsinfo.de/doi/e156708

LCH-REG-DE 2013

German registry for Langerhans cell histiocytosis in children and adolescents

Disease

Langerhans cell Histiocytosis

Type

Registry

- temporary stoped
Rationale / Objectives

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.

Therapy / Study arms
  • 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).

Inclusion Criteria
  • Definitive diagnosis of LCH
  • Age under 18 years at diagnosis
  • Inclusion criteria for the respective stratum
  • Signed informed consent form
Exclusion Criteria
  • Please note the exclusion criteria for the respective stratum
Status Start 4th quarter 2013, temporary stoped since 16.05.2023
Principal Investigator Prof. Dr. Thomas Lehrnbecher
E-Mail thomas.lehrnbecher@kgu.de
Contact

National Investigator

Prof. Dr. med. Thomas Lehrnbecher Universitätsklinikum Frankfurt/Main Zentrum für Kinder- und Jugendmedizin, Klinik III Theodor-Stern-Kai 7 60590 Frankfurt Telefon +49 / (0)69 / 630 183 481 Fax +49 / (0)69 / 630 167 00 thomas_lehrnbecher@yahoo.com

Deputy Investigator

Anke Barnbrock Universitätsklinikum Frankfurt Klinik für Kinder- und Jugendmedizin, Schwerpunkt Onkologie und Hämatologie Theodor-Stern-Kai 7 60590 Frankfurt/Main Telefon +49(69) 6301 6489 anke@barnbrock.de

Registry Rare Histiocytosis

Carl Friedrich Classen Universitäts-Kinder- und Jugendklinik Rostock Pädiatrische Hämatologie und Onkologie Ernst-Heydemann-Str. 8 18057 Rostock Telefon +49 (0) 381-494 7262 Fax +49 (0) 398-494 7261 carl-friedrich.classen@med.uni-rostock.de

Participants Deutschland