Data quality in rare cancers registraton: The report of the RARECARE data quality study

A. Trama, Rafael Marcos-Gragera, Maria Josè Sánchez Pérez, Jan Maarten Van Der Zwan, Eva Ardanaz, Christne Bouchardy, Juan Manuel Melchor, Carmen Martnez, Riccardo Capocaccia, Massimo Vicentni, Sabine Siesling, Gemma Gata, N. Zielonk, E. Van Eycken, K. Henau, M. Mägi, A. M. Bouvier, Valérie Jooste, J. Faivre, Marc MaynadiéI. Manivet, H. Comber, S. Deady, F. Bellù, Tomas Dal Cappello, S. Ferret, Marina Vercelli, A. Quaglia, M. Federico, C. Cirilli, M. Fusco, Maria Michiara, P. Sgargi, A. Giacomin, R. Tumino, S. Cilia, Eugenia Spata, L. Mangone, M. Vicentni, S. Cinzia, F. Falcini, S. Giorget, S. Pifer, S. Franchini, E. Crocet, A. Caldarella, G. Tagliabue, Paola Zambon, A. R. Fiore, A. P. Dei Tos, G. Gata, A. Trama, R. Capocaccia, R. De Angelis, K. England, S. Gozdz, R. Mȩzyk, Maria Zwierko, M. Bielska-Lasota, J. Slowinski, M. Primic-Zakelj, F. Škrlec, A. Mateos, J. Bidaurrazaga, R. Marcos-Gragera, E. Ardanaz, J. Galceran, J. M. Díaz García, C. Martnez-Garcia, M. J. Sanchez Perez, J. M. Melchor, J. Adolfsson, C. Bouchardy, M. Usel, S. M. Ess, Alessandra Spitale, A. Bordoni, I. Konzelmann, O. Visser, R. Oter, S. Siesling, J. M. van der Zwan

Research output: Contribution to journalArticlepeer-review


Purpose: Rare cancers represent 22% of all tumors in Europe; however, the quality of the data of rare cancers may not be as good as the quality of data for common cancer. The project surveillance of rare cancers in Europe (RARECARE) had, among others, the objectve of assessing rare cancer data quality in populaton-based cancer registries (CRs). Eight rare cancers were considered: mesothelioma, liver angiosarcoma, sarcomas, tumors of oral cavity, CNS tumors, germ cell tumors, leukemia, and malignant digestve endocrine tumors. Methods: We selected data on 18,000 diagnoses and revised, on the basis of the pathologic and clinical reports (but not on pathologic specimens), unspecified morphology and topography codes originally atributed by CR officers and checked the quality of follow-up of long-term survivors of poor prognosis cancers. Results: A total of 38 CRs contributed from 13 European countries. The majority of unspecified morphology and topography cases were confirmed as unspecified. The few unspecified cases that, after the review, changed to a more specific diagnosis increased the incidence of the common cancer histotypes. For example, 11% of the oral cavity epithelial cancers were reclassified from unspecified to more specific diagnoses: 8% were reclassified as squamous cell carcinoma (commoner) and only 1% as adenocarcinoma (rarer). The revision confirmed the majority of long-term survivors revealing a relatve high proporton of mesothelioma long-term survivors. The majority of appendix carcinoids changed behavior from malignant to borderline lesions. Conclusions: Our study suggests that the problem of poorly specified morphology and topography cases is mainly one of difficulty in reaching a precise diagnosis. The awareness of the importance of data quality for rare cancers should increase among registrars, pathologists, and clinicians.

Original languageEnglish
Pages (from-to)22-32
Number of pages11
Issue number1
Publication statusPublished - Jan 1 2017


  • Data quality registraton
  • Populaton-based cancer registry
  • Rare cancers

ASJC Scopus subject areas

  • Medicine(all)
  • Oncology
  • Cancer Research


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