2026-04-13T08:34:44Zhttps://recercat.cat/oai/request

oai:recercat.cat:2072/4713972025-09-22T06:56:09Zcom_2072_98col_2072_378192

00925njm 22002777a 4500 dc Cañete, Adela author Peris-Bonet, Rafael author Capocaccia, Riccardo author Pardo-Romaguera, Elena author Segura, Vanessa author Muñoz-López, Ana author Fernandez-Teijeiro, Ana author Galceran, Jaume author Gatta, Gemma author Almazán Castro, Francisco author Benito, A.I. author Buedo Rubio, María Isabel author Calvo, Carlota author Cruz, Ofelia author Esquembre, Carlos S. author Jorge Fernández, Mónica author Fuster, José Luis author García, María José Acosta author Gil López, Celia author Gómez, José author Gondra, Ainhoa author González, Marta Sonia author González, Horacio M. author Herrero, Blanca author Lassaletta, Álvaro author López Almaraz , Ricardo author López-Ibor Aliño, Blanca author Madero López, Luis author Maldonado, Soledad author Mares, F.J. author Márquez Vega, Catalina author Mateos, M.E. author Melwani, K. author Mendoza, M.C. author Moreno, Lucas author Moreno, Miriam L. author Muñoz, G.M. author Ortega, M.J. author Panizo Morgado, Elena author Pisa, S author Portugal, Raquel author Sagaseta de Ilúrdoz, María author Salinas, José Antonio author Sastre, Ana author Tallón, María author Torrent, Montse author Uriz, José Javier author Varo, A. author Vázquez, María Ángeles author Vílchez, J.S. author Villegas, José Antonio author Vivanco, J.L. author Zamora Auñon, Maria del Pilar author Álamo Sanz, Rufino author Alemán, Araceli author Chico Mena, Matilde author Chirlaque López , María Dolores author Marcos-Gragera, Rafael author Mateos, A. author Quirós García, José Ramón author Sanchez-Contador, Carmen author Sabater, Consol author 2022 Altres ajuts: Ministerio de Sanidad; Universitat de València; Sociedad Española de Oncología Pediátrica; Fundación de Oncología Infantil Enriqueta Villavecchia. Purpose: 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. Material and methods: Subjects: Nb cases, incident 1999-2017, aged < 15 years. Linkage included: Spanish Neuroblastoma Clinical Database (NbCDB) (1217 cases); Spanish Registry of Childhood Tumours (RETI) (1514 cases); and 10 regional population-based registries (RPBCRs) which cover 33% of the childhood population (332 cases). Linkage was semiautomatic. We estimated completeness, incidence, contribution, deficit, and 5-year survival in the databases and specific subsets. Results: 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). Conclusions: 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. Neuroblastoma Childhood cancer Cancer registry Clinical registry Record linkage Completeness Incidence Survival European Reference Network Joint Action on Rare Cancers Neuroblastoma in Spain : Linking the national clinical database and epidemiological registries - A study by the Joint Action on Rare Cancers