TY - JOUR
T1 - Evaluating access to pediatric cancer care centers of children and adolescents with rare tumors in Italy
T2 - The TREP project
AU - Pastore, Guido
AU - De Salvo, Gian Luca
AU - Bisogno, Gianni
AU - Dama, Elisa
AU - Inserra, Alessandro
AU - Cecchetto, Giovanni
AU - Ferrari, Andrea
PY - 2009/8
Y1 - 2009/8
N2 - 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.
AB - 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.
KW - Adolescents
KW - Childhood malignancies
KW - Epidemiology
KW - Rare pediatric tumors
KW - TREP project
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U2 - 10.1002/pbc.22049
DO - 10.1002/pbc.22049
M3 - Article
C2 - 19353626
AN - SCOPUS:67649980522
VL - 53
SP - 152
EP - 155
JO - Pediatric Blood and Cancer
JF - Pediatric Blood and Cancer
SN - 1545-5009
IS - 2
ER -