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 Maynadié & 62 others I. 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 journalArticle

16 Citations (Scopus)

Abstract

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
JournalTumori
Volume103
Issue number1
DOIs
Publication statusPublished - Jan 1 2017

Fingerprint

Neoplasms
Survivors
Registries
Data Accuracy
Mesothelioma
Mouth
Hemangiosarcoma
Germ Cell and Embryonal Neoplasms
Carcinoid Tumor
Appendix
Sarcoma
Squamous Cell Carcinoma
Leukemia
Adenocarcinoma
Liver
Incidence

Keywords

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

ASJC Scopus subject areas

  • Medicine(all)
  • Oncology
  • Cancer Research

Cite this

Trama, A., Marcos-Gragera, R., Pérez, M. J. S., Zwan, J. M. V. D., Ardanaz, E., Bouchardy, C., ... van der Zwan, J. M. (2017). Data quality in rare cancers registraton: The report of the RARECARE data quality study. Tumori, 103(1), 22-32. https://doi.org/10.5301/tj.5000559

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

In: Tumori, Vol. 103, No. 1, 01.01.2017, p. 22-32.

Research output: Contribution to journalArticle

Trama, A, Marcos-Gragera, R, Pérez, MJS, Zwan, JMVD, Ardanaz, E, Bouchardy, C, Melchor, JM, Martnez, C, Capocaccia, R, Vicentni, M, Siesling, S, Gata, G, Zielonk, N, Van Eycken, E, Henau, K, Mägi, M, Bouvier, AM, Jooste, V, Faivre, J, Maynadié, M, Manivet, I, Comber, H, Deady, S, Bellù, F, Dal Cappello, T, Ferret, S, Vercelli, M, Quaglia, A, Federico, M, Cirilli, C, Fusco, M, Michiara, M, Sgargi, P, Giacomin, A, Tumino, R, Cilia, S, Spata, E, Mangone, L, Vicentni, M, Cinzia, S, Falcini, F, Giorget, S, Pifer, S, Franchini, S, Crocet, E, Caldarella, A, Tagliabue, G, Zambon, P, Fiore, AR, Dei Tos, AP, Gata, G, Trama, A, Capocaccia, R, De Angelis, R, England, K, Gozdz, S, Mȩzyk, R, Zwierko, M, Bielska-Lasota, M, Slowinski, J, Primic-Zakelj, M, Škrlec, F, Mateos, A, Bidaurrazaga, J, Marcos-Gragera, R, Ardanaz, E, Galceran, J, Díaz García, JM, Martnez-Garcia, C, Sanchez Perez, MJ, Melchor, JM, Adolfsson, J, Bouchardy, C, Usel, M, Ess, SM, Spitale, A, Bordoni, A, Konzelmann, I, Visser, O, Oter, R, Siesling, S & van der Zwan, JM 2017, 'Data quality in rare cancers registraton: The report of the RARECARE data quality study', Tumori, vol. 103, no. 1, pp. 22-32. https://doi.org/10.5301/tj.5000559
Trama A, Marcos-Gragera R, Pérez MJS, Zwan JMVD, Ardanaz E, Bouchardy C et al. Data quality in rare cancers registraton: The report of the RARECARE data quality study. Tumori. 2017 Jan 1;103(1):22-32. https://doi.org/10.5301/tj.5000559
Trama, A. ; Marcos-Gragera, Rafael ; Pérez, Maria Josè Sánchez ; Zwan, Jan Maarten Van Der ; Ardanaz, Eva ; Bouchardy, Christne ; Melchor, Juan Manuel ; Martnez, Carmen ; Capocaccia, Riccardo ; Vicentni, Massimo ; Siesling, Sabine ; Gata, Gemma ; Zielonk, N. ; Van Eycken, E. ; Henau, K. ; Mägi, M. ; Bouvier, A. M. ; Jooste, Valérie ; Faivre, J. ; Maynadié, Marc ; Manivet, I. ; Comber, H. ; Deady, S. ; Bellù, F. ; Dal Cappello, Tomas ; Ferret, S. ; Vercelli, Marina ; Quaglia, A. ; Federico, M. ; Cirilli, C. ; Fusco, M. ; Michiara, Maria ; Sgargi, P. ; Giacomin, A. ; Tumino, R. ; Cilia, S. ; Spata, Eugenia ; Mangone, L. ; Vicentni, M. ; Cinzia, S. ; Falcini, F. ; Giorget, S. ; Pifer, S. ; Franchini, S. ; Crocet, E. ; Caldarella, A. ; Tagliabue, G. ; Zambon, Paola ; Fiore, A. R. ; Dei Tos, A. P. ; Gata, G. ; Trama, A. ; Capocaccia, R. ; De Angelis, R. ; England, K. ; Gozdz, S. ; Mȩzyk, R. ; Zwierko, Maria ; Bielska-Lasota, M. ; Slowinski, J. ; Primic-Zakelj, M. ; Škrlec, F. ; Mateos, A. ; Bidaurrazaga, J. ; Marcos-Gragera, R. ; Ardanaz, E. ; Galceran, J. ; Díaz García, J. M. ; Martnez-Garcia, C. ; Sanchez Perez, M. J. ; Melchor, J. M. ; Adolfsson, J. ; Bouchardy, C. ; Usel, M. ; Ess, S. M. ; Spitale, Alessandra ; Bordoni, A. ; Konzelmann, I. ; Visser, O. ; Oter, R. ; Siesling, S. ; van der Zwan, J. M. / Data quality in rare cancers registraton : The report of the RARECARE data quality study. In: Tumori. 2017 ; Vol. 103, No. 1. pp. 22-32.
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abstract = "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.",
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TY - JOUR

T1 - Data quality in rare cancers registraton

T2 - The report of the RARECARE data quality study

AU - Trama, A.

AU - Marcos-Gragera, Rafael

AU - Pérez, Maria Josè Sánchez

AU - Zwan, Jan Maarten Van Der

AU - Ardanaz, Eva

AU - Bouchardy, Christne

AU - Melchor, Juan Manuel

AU - Martnez, Carmen

AU - Capocaccia, Riccardo

AU - Vicentni, Massimo

AU - Siesling, Sabine

AU - Gata, Gemma

AU - Zielonk, N.

AU - Van Eycken, E.

AU - Henau, K.

AU - Mägi, M.

AU - Bouvier, A. M.

AU - Jooste, Valérie

AU - Faivre, J.

AU - Maynadié, Marc

AU - Manivet, I.

AU - Comber, H.

AU - Deady, S.

AU - Bellù, F.

AU - Dal Cappello, Tomas

AU - Ferret, S.

AU - Vercelli, Marina

AU - Quaglia, A.

AU - Federico, M.

AU - Cirilli, C.

AU - Fusco, M.

AU - Michiara, Maria

AU - Sgargi, P.

AU - Giacomin, A.

AU - Tumino, R.

AU - Cilia, S.

AU - Spata, Eugenia

AU - Mangone, L.

AU - Vicentni, M.

AU - Cinzia, S.

AU - Falcini, F.

AU - Giorget, S.

AU - Pifer, S.

AU - Franchini, S.

AU - Crocet, E.

AU - Caldarella, A.

AU - Tagliabue, G.

AU - Zambon, Paola

AU - Fiore, A. R.

AU - Dei Tos, A. P.

AU - Gata, G.

AU - Trama, A.

AU - Capocaccia, R.

AU - De Angelis, R.

AU - England, K.

AU - Gozdz, S.

AU - Mȩzyk, R.

AU - Zwierko, Maria

AU - Bielska-Lasota, M.

AU - Slowinski, J.

AU - Primic-Zakelj, M.

AU - Škrlec, F.

AU - Mateos, A.

AU - Bidaurrazaga, J.

AU - Marcos-Gragera, R.

AU - Ardanaz, E.

AU - Galceran, J.

AU - Díaz García, J. M.

AU - Martnez-Garcia, C.

AU - Sanchez Perez, M. J.

AU - Melchor, J. M.

AU - Adolfsson, J.

AU - Bouchardy, C.

AU - Usel, M.

AU - Ess, S. M.

AU - Spitale, Alessandra

AU - Bordoni, A.

AU - Konzelmann, I.

AU - Visser, O.

AU - Oter, R.

AU - Siesling, S.

AU - van der Zwan, J. M.

PY - 2017/1/1

Y1 - 2017/1/1

N2 - 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.

AB - 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.

KW - Data quality registraton

KW - Populaton-based cancer registry

KW - Rare cancers

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U2 - 10.5301/tj.5000559

DO - 10.5301/tj.5000559

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