Primary liver tumours in children and adolescents are rare and affect 0.3-1% of all paediatric tumours. In Central Europe, the incidence is 0.5-2 cases per 1 million children. The most common tumours are hepatoblastoma (HB) in infants and young children and hepatocellular carcinoma (HCC) in schoolchildren and adolescents. Malignant, non-epithelial tumours from the group of sarcomas, as well as germ cell tumours, rhabdoid tumours and others are much rarer.
The liver tumour register aims to comprehensively register all children, adolescents and young adults suffering from benign or malignant liver tumours in Germany. Special emphasis is placed on the collection of comprehensive epidemiological data, the documentation of therapy, the recording and checking of the function of the reference structures and the preservation of tumour and patient material in a GPOH tumour bank.
Objectives
Epidemiology: Expansion of knowledge on the following epidemiological aspects of primary liver tumours in children and adolescents in addition to the data recorded in the IMBEI (see initial IMBEI report): Frequency, age distribution, familial burden and genetic predisposition, associated diseases and infections, tumour symptoms, tumour status at diagnosis, histology and disease progression (survey questionnaire, questionnaire on follow-up care / late effects, histology questionnaire)
Health services research: recording and review
Translated with DeepL.com (free version)
Primary liver tumours in children and adolescents are rare and affect 0.3-1% of all paediatric tumours. In Central Europe, the incidence is 0.5-2 cases per 1 million children. The most common tumours are hepatoblastoma (HB) in infants and young children and hepatocellular carcinoma (HCC) in schoolchildren and adolescents. Malignant, non-epithelial tumours from the group of sarcomas, as well as germ cell tumours, rhabdoid tumours and others are much rarer.
The liver tumour register aims to comprehensively register all children, adolescents and young adults suffering from benign or malignant liver tumours in Germany. Special emphasis is placed on the collection of comprehensive epidemiological data, the documentation of therapy, the recording and checking of the function of the reference structures and the preservation of tumour and patient material in a GPOH tumour bank.
Objectives
Epidemiology: Expansion of knowledge on the following epidemiological aspects of primary liver tumours in children and adolescents in addition to the data recorded in the IMBEI (see initial IMBEI report): Frequency, age distribution, familial burden and genetic predisposition, associated diseases and infections, tumour symptoms, tumour status at diagnosis, histology and disease progression (survey questionnaire, questionnaire on follow-up care / late effects, histology questionnaire)
Health services research: recording and review
Translated with DeepL.com (free version)
