Evaluating access to pediatric cancer care centers of children and adolescents with rare tumors in Italy: The TREP project

Guido Pastore, Gian Luca De Salvo, Gianni Bisogno, Elisa Dama, Alessandro Inserra, Giovanni Cecchetto, Andrea Ferrari

Research output: Contribution to journalArticlepeer-review


Background. A national project focusing on rare malignant pediatric tumors (the TREP project) was launched in Italy in 2000. The present study compared the number of these tumors expected to be diagnosed in Italy with the number of cases actually enrolled in the TREP database in 2000-2006. Methods. The predicted number of cases was calculated from incidence data from the Italian network of cancer registries (AIRTum). Results. The TREP database included 336 patients under 18 years, that is, 261 children and 75 adolescents, as compared to 305 and 400 expected cases, respectively. For the 0-14 years old age-group, the ratio of observed to expected cases was 1:1 for nasopharyngeal carcinoma, adrenocortical tumors, renal cell carcinoma, and gonadal non-germ-cell tumors, while for the 15-17-year old individuals there was a statistically significant underreporting for all tumor types. Conclusions. Our study showed that the TREP project succeeded in registering and treating the vast majority of the patients under 15 years of age with rare pediatric tumors, demonstrating the feasibility of cooperative protocols even for rare diseases. Conversely, there was a large gap between those registered compared to those expected for adolescents.

Original languageEnglish
Pages (from-to)152-155
Number of pages4
JournalPediatric Blood and Cancer
Issue number2
Publication statusPublished - Aug 2009


  • Adolescents
  • Childhood malignancies
  • Epidemiology
  • Rare pediatric tumors
  • TREP project

ASJC Scopus subject areas

  • Medicine(all)
  • Hematology
  • Oncology
  • Pediatrics, Perinatology, and Child Health


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