Sistema di rilevazione del casi di tumore maligno in età pediatrica in Italia su base ospedaliera

Objective Since 1989, centres belonging to Italian Association for Paediatric Haematology Oncology (AIEOP) and to Italian Task Force for Paediatric Oncology (FONOP) adopted a common centralised system for registration of childhood cancer. The system has as principal aims to set up a Hospital-based national Registry of paediatric cancer and to monitor protocol's enrolment. Materials and methods Children are registered, in each centre, using a short data form (Mod. 1.01), collecting information on personal data, diagnosis, therapy and reason for missing accrual in an AIEOP/FONOP clinical trial. The number of expected cases has been calculated applying age-specific rates from the Registry of childhood cancer of Piedmont to the whole Italian population. Results From January 1989 to December 1994, 6726 cases were collected from 51 AIEOP/FONOP centres. Of these, 6310 patients, younger than 15 years and resident in Italy, affected by malignant tumours were included in this report. The average number of observed cases per year is 1052 and the observed to expected ratio is 0.78. The overall proportion of registered cases being treated by AIEOP/FONOP protocols is 0.70, varying largely between specific cancer types. Our data confirm the persistence of migratory phenomena: 57% cases have been diagnosed and treated in centres located in Northern Italy regions. Conclusions A Hospital-based national Registry of paediatric cancer has been created through this system which leads to monitor AIEOP/FONOP activities, to plan future research on paediatric oncology and to manage regional resources and funds allocation.