Neuroblastoma in Spain: Linking the national clinical database and epidemiological registries – A study by the Joint Action on Rare Cancers |
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| Institution: | 1. Hospital Germans Trias i Pujol, Barcelona, Spain;2. Hospital Materno-Infantil Carlos Haya, Málaga, Spain;3. Hospital General Universitario, Albacete, Spain;4. Hospital Miguel Servet, Zaragoza, Spain;5. Hospital La Fe, Valencia, Spain;6. Hospital Sant Joan de Déu, Barcelona, Spain;7. Hospital General, Alicante, Spain;8. Hospital Clínico Universitario, Santiago de Compostela, Spain;9. Hospital Virgen Macarena, Sevilla, Spain;10. Hospital Virgen de la Arrixaca, Murcia, Spain;11. Hospital Gregorio Marañón, Madrid, Spain;12. Hospital San Carlos, Madrid, Spain;13. Hospital Nuestra Señora de la Candelaria, Tenerife, Spain;14. Hospital Basurto, Bilbao, Spain;15. Hospital Universitario de Canarias, Tenerife, Spain;p. Hospital Clínico Universitario, Valladolid, Spain;q. Hospital Sanitas La Moraleja, Madrid, Spain;r. Hospital Niño Jesús, Madrid, Spain;s. Hospital Cruces, Vizcaya, Spain;t. Hospital Montepríncipe, Madrid, Spain;u. Hospital Universitario Quironsalud, Madrid, Spain;v. Hospital Ramón y Cajal, Madrid, Spain;w. Hospital Clínico Universitario, Valencia, Spain;x. Hospital Virgen del Rocío, Sevilla, Spain;y. Hospital Reina Sofía, Córdoba, Spain;z. Hospital Materno-Infantil Canarias, Las Palmas, Spain;11. Hospital Clínico Universitario, Salamanca, Spain;12. Hospital Vall d''Hebron, Barcelona, Spain;13. Hospital Materno-Infantil, Badajoz, Spain;14. Hospital CHUAC, A Coruña, Spain;15. Hospital Virgen de las Nieves, Granada, Spain;16. Clínica Universitaria Navarra, Pamplona, Spain;17. Hospital de Sabadell, Barcelona, Spain;18. Hospital Universitario, Burgos, Spain;19. Virgen del Camino, Pamplona, Spain;110. Hospital Son Espases, Palma de Mallorca, Spain;111. Hospital La Paz, Madrid, Spain;112. Hospital Álvaro Cunqueiro Vigo, Spain;113. Hospital Sant Pau, Barcelona, Spain;114. Hospital Donostia, San Sebastián, Spain;115. Hospital San Rafael, Madrid, Spain;1p. Hospital Torrecárdenas, Almería, Spain;1q. Hospital Materno-Infantil, Jaén, Spain;1r. Hospital Central de Asturias, Oviedo, Spain;1s. Hospital 12 Octubre, Madrid, Spain;1t. Hospital Virgen de la Salud, Toledo, Spain;1u. Castilla-Leon Cancer Registry, Spain;1v. Canarias Cancer Registry, Spain;1w. Ciudad Real Cancer Registry, Spain;1x. Murcia Cancer Registry, Spain;1y. Tarragona Cancer Registry, Spain;1z. Girona Cancer Registry, Spain;21. Albacete Cancer Registry, Spain;22. Asturias Cancer Registry, Spain;23. Mallorca Cancer Registry, Spain;24. Comunitat Valenciana Childhood Cancer Registry, Spain;1. Spanish Registry of Childhood Tumours (RETI-SEHOP), University of Valencia, Valencia, Spain;2. Paediatric Oncohematology Unit, Hospital La Fe; and Department of Paediatrics, University of Valencia, Valencia, Spain;3. Direzione scientifica, Epidemiologia & Prevenzione, Milano, Italy;4. Clinical Translational Cancer Research Group – Paediatric Oncology, IIS La Fe, Valencia, Spain;5. Spanish Society of Paediatric Haematology and Oncology (SEHOP), Spain;6. Paediatric Oncohematology Unit, Hospital Universitario Virgen Macarena, University of Sevilla, Sevilla, Spain;7. Spanish Network of Cancer Registries (REDECAN), Spain;8. Department of Epidemiological Research and Molecular Medicine, Evaluative Epidemiology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori di Milano, Italy |
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| Abstract: | PurposeLinkage 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 methodsSubjects: 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.ResultsNational 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).ConclusionsAll 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. |
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| Keywords: | Neuroblastoma Childhood cancer Cancer registry Clinical registry Record linkage Completeness Incidence Survival European Reference Network Joint Action on Rare Cancers |
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