dc.creator | Cañete, Adela | es |
dc.creator | Peris Bonet, Rafael | es |
dc.creator | Capocaccia, Riccardo | es |
dc.creator | Pardo Romaguera, Elena | es |
dc.creator | Segura, Vanessa | es |
dc.creator | Muñoz López, Ana | es |
dc.creator | Fernández-Teijeiro, Ana | es |
dc.creator | Sabater, C. | es |
dc.date.accessioned | 2022-10-20T16:03:16Z | |
dc.date.available | 2022-10-20T16:03:16Z | |
dc.date.issued | 2022 | |
dc.identifier.citation | Cañete, A., Peris Bonet, R., Capocaccia, R., Pardo Romaguera, E., Segura, V., Muñoz López, A.,...,Sabater, C. (2022). Neuroblastoma in Spain: Linking the national clinical database and epidemiological registries – A study by the Joint Action on Rare Cancers. Cancer Epidemiology, 78, 102145. https://doi.org/10.1016/j.canep.2022.102145. | |
dc.identifier.issn | 1877-7821 | es |
dc.identifier.issn | 1877-783X | es |
dc.identifier.uri | https://hdl.handle.net/11441/138204 | |
dc.description.abstract | Purpose: Linkage between clinical databases and population-based cancer registries may serve to evaluate Eu ropean 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. | es |
dc.format | application/pdf | es |
dc.format.extent | 8 p. | es |
dc.language.iso | eng | es |
dc.publisher | Science Direct | es |
dc.relation.ispartof | Cancer Epidemiology, 78, 102145. | |
dc.rights | Attribution-NonCommercial-NoDerivatives 4.0 Internacional | * |
dc.rights.uri | http://creativecommons.org/licenses/by-nc-nd/4.0/ | * |
dc.subject | Neuroblastoma | es |
dc.subject | Childhood cancer | es |
dc.subject | Cancer registry | es |
dc.subject | Clinical registry | es |
dc.subject | Record linkage | es |
dc.subject | Completeness | es |
dc.subject | Incidence | es |
dc.subject | Survival | es |
dc.subject | European Reference Network | es |
dc.subject | Joint Action on Rare Cancers | es |
dc.title | Neuroblastoma in Spain: Linking the national clinical database and epidemiological registries – A study by the Joint Action on Rare Cancers | es |
dc.type | info:eu-repo/semantics/article | es |
dc.type.version | info:eu-repo/semantics/publishedVersion | es |
dc.rights.accessRights | info:eu-repo/semantics/openAccess | es |
dc.contributor.affiliation | Universidad de Sevilla. Departamento de Farmacología, Pediatría y Radiología | es |
dc.relation.publisherversion | https://www.sciencedirect.com/science/article/pii/S1877782122000509?via%3Dihub | es |
dc.identifier.doi | 10.1016/j.canep.2022.102145 | es |
dc.journaltitle | Cancer Epidemiology | es |
dc.publication.volumen | 78 | es |
dc.publication.initialPage | 102145 | es |
dc.contributor.funder | Ministerio de Sanidad. España | es |
dc.contributor.funder | Universidad de Valencia | es |
dc.contributor.funder | Unión Europea | es |