Registry Rare Tumours

Rare tumors, that are not part of a prospective therapy optimizing trial of the GPOH i.e. skin tumors, tumors of the throught, nose,or ear, gatrointestinal tumors, kidney tumors, tumors of the female genitals

Registry for the optimization of the epidemiologic and clinical registration of children and adolescents with very rare tumors

1. A better epidemiologic and clinical registration of children and adolescents with very rare tumors
2. The scientific evauation of the collected data
3. The development of strategies/recomandations for diagnostic and therapy
4. Recomandation for the inclusion of patients in responsible therapy optimizing trials or phase I/II trials t
5. Creation of an visible platform for advices for patients and hopsitals
6. The placement of competence centres (i.e. Tumorregistry in Kiel for diagnostical questions) and the better inclusion of this patients into the health care of the paediatric oncology in Germany

Expo-r-Net: Im Rahmen eines europäischen Vernetzungsprojekt haben sich die nationalen Arbeitsgruppen der European Cooperative Study Group of Pediatric Rare Tumors (EXPeRT) enger zusammengeschlossen und bauen ein virtuelles Tumorboard auf, um multidisziplinäre Beratungen bei besonders seltenen Tumorentiäten anzubieten.
Kontakt: expert-advice(at)klinikumdo.de

• Diagnosis of a very rare tumor
• age at diagnosis 0-18 years
• Signed informed consent of the patient and/or the parent(s)

• Erfassung der Tumordiagnose in einer prospektiven Therapiestudie / einem Register der GPOH
• Fehlende Information, Aufklärung und/oder schriftliche Einwilligung des Patienten bzw. der Sorgeberechtigten.