RT Journal Article
T1 Neuroblastoma in Spain: Linking the national clinical database and epidemiological registries - A study by the Joint Action on Rare Cancers.
A1 Cañete, Adela
A1 Peris-Bonet, Rafael
A1 Capocaccia, Riccardo
A1 Pardo-Romaguera, Elena
A1 Segura, Vanessa
A1 Muñoz-López, Ana
A1 Fernández-Teijeiro, Ana
A1 Galceran-Padros, Jaume
A1 Gatta, Gemma
A1 Spanish Neuroblastoma Linkage Working Group (SpNbLinkWG), 
K1 Cancer registry
K1 Childhood cancer
K1 Clinical registry
K1 Completeness
K1 European Reference Network
K1 Incidence
K1 Joint Action on Rare Cancers
K1 Neuroblastoma
K1 Record linkage
K1 Survival
AB Linkage between clinical databases and population-based cancer registries may serve to evaluate European Reference Networks' (ERNs) activity, by monitoring the proportion of patients benefiting from these and their impact on survival at a population level. To test this, a study targeting neuroblastoma (Nb) was conducted in Spain by the European Joint Action on Rare Cancers. Subjects: Nb cases, incident 1999-2017, aged  National completeness estimates for RETI and NbCDB were 91% and 72% respectively, using the Spanish RPBCRs on International Incidence of Childhood Cancer (https://iicc.iarc.fr/) as reference. RPBCRs' specific contribution was 1.6%. Linkage required manual crossover in 54% of the semiautomatic matches. Five-year survival was 74% (0-14 years) and 90% (0-18 months). All three databases were incomplete as regards Spain as a whole and should therefore be combined to achieve full childhood cancer registration. A unique personal patient identifier could facilitate such linkage. Most children have access to Nb clinical trials. Consolidated interconnections between the national registry and clinical registries (including ERNs and paediatric oncology clinical groups) should be established to evaluate outcomes.
YR 2022
FD 2022-03-25
LK http://hdl.handle.net/10668/22069
UL http://hdl.handle.net/10668/22069
LA en
DS RISalud
RD Apr 5, 2025