5.         Swiss National Registry for Pediatric Patients with Malignant Liver Tumors – SWISSLIVERRE

Hepatic tumors represent the third largest group of pediatric intra-abdominal tumors, after neuroblastoma and renal tumors. They account for approximately 1% of all pediatric tumors and include hepatoblastoma (HB), hepatocellular carcinoma (HCC), unspecified hepatocellular neoplasm (HCN NOS), and undifferentiated embryonal sarcoma of the liver (UESL).

The development of a national registry for pediatric patients with liver tumors will provide an overview of clinical and epidemiological data, as well as therapeutic strategies and short- and long-term outcomes. We will prospectively collect clinical, biological, radiological, histological, genetic, and molecular pathology data from patients under 18 years of age with liver tumors diagnosed in Switzerland, sourced from the Geneva pediatric biobank, BaHOP. All patients or their legal representatives will be required to sign the consent form. The 9 institutions of the Swiss Pediatric Oncology Group (SPOG); namely Aarau, Bern, Basel, Bellinzona, Geneva, Lausanne, Lucerne, St. Gallen & Zurich; will participate in data collection. We will establish a national tumor board to discuss all cases of liver tumors and develop national recommendations for the management of these patients, based on international recommendations following the results of the PHITT study.

The protocol will be submitted for approval by the Swiss Ethics Committee (CE) and will be presented to SPOG.