Uses of cancer registries for public health and clinical research in Europe: Results of the European Network of Cancer Registries survey among 161 population-based cancer registries during 2010-2012

European Journal of Cancer

Volumn 51, Issue 9, 2015, Pages 1039-1049

  Siesling, S ^a,b   Louwman, W J ^c   Kwast, A ^a   Van Den Hurk, C ^c   O'Callaghan, M ^d   Rosso, S ^f   Zanetti, R ^f   Storm, H ^g   Comber, H ^d   Steliarova Foucher, E ^e   Coebergh, J W ^c,h  

^a The Netherlands Comprehensive Cancer Organisation   (Netherlands)

^b UNIVERSITY OF TWENTE   (Netherlands)

^c The Netherlands   (Netherlands)

^d NATIONAL CANCER REGISTRY IRELAND   (Ireland)

^e INTERNATIONAL AGENCY FOR RESEARCH ON CANCER   (France)

^f CPO   (Italy)

^g DANISH CANCER SOCIETY RESEARCH CENTER   (Denmark)

^h ERASMUS MEDICAL CENTER   (Netherlands)

Author keywords

Cancer registry; Clinical research; Outcomes research; Public health research; Survey

Indexed keywords

ACCESS TO INFORMATION; ARTICLE; BELGIUM; CANCER CONTROL; CANCER INCIDENCE; CANCER REGISTRY; CANCER RESEARCH; CANCER SCREENING; CANCER STAGING; CANCER SURVIVAL; CLINICAL RESEARCH; EUROPEAN UNION; FRANCE; GERMANY; HEALTH CARE QUALITY; HEALTH CARE SURVEY; HUMAN; MAJOR CLINICAL STUDY; MEDICAL AUDIT; NETHERLANDS; PRIORITY JOURNAL; PROTOCOL COMPLIANCE; PUBLIC HEALTH SERVICE; COMMUNICATION DISORDER; COMPUTER NETWORK; CONFIDENTIALITY; ELECTRONIC MEDICAL RECORD; EUROPE; INFORMATION RETRIEVAL; INFORMED CONSENT; LAW; LEGISLATION AND JURISPRUDENCE; MEDICAL RESEARCH; NEOPLASMS; ORGANIZATION AND MANAGEMENT; PROCEDURES; PUBLIC HEALTH; QUESTIONNAIRE; REGISTER; STATISTICS AND NUMERICAL DATA; UTILIZATION;

BIOMEDICAL RESEARCH; COMMUNICATION BARRIERS; COMPUTER COMMUNICATION NETWORKS; CONFIDENTIALITY; EUROPE; HUMANS; INFORMATION STORAGE AND RETRIEVAL; INFORMED CONSENT; LEGISLATION AS TOPIC; MEDICAL RECORDS SYSTEMS, COMPUTERIZED; NEOPLASMS; PUBLIC HEALTH; QUESTIONNAIRES; REGISTRIES; SURVEYS AND QUESTIONNAIRES;

EID: 84929842865     PISSN: 09598049     EISSN: 18790852     Source Type: Journal    
DOI: 10.1016/j.ejca.2014.07.016     Document Type: Article

References (38)

1. B. Terracini, and R. Zanetti A short history of pathology registries, with emphasis on cancer registries Soz Praventivmed 48 1 2003 3 10
2. D.M. Parkin, F. Bray, J. Ferlay, and P. Pisani Global cancer statistics, 2002 CA Cancer J Clin 55 2 2005 74 108
3. D.M. Parkin, and F. Bray Evaluation of data quality in the cancer registry: principles and methods part II completeness Eur J Cancer 45 5 2009 756 764
4. F. Bray, and D.M. Parkin Evaluation of data quality in the cancer registry: principles and methods. Part I: comparability, validity and timeliness Eur J Cancer 45 5 2009 747 755
5. F. Bray, R. Sankila, J. Ferlay, and D.M. Parkin Estimates of cancer incidence and mortality in Europe in 1995 Eur J Cancer 38 1 2002 99 166
6. M.P. Coleman, J. Estève, P. Damiecki, A. Arslan, and H. Renard Trends in cancer incidence and mortality IARC Sci Publ 121 1993 1 806
7. http://ci5.iarc.fr/.
8. http://www.eurocare.it/.
9. R. De Angelis, M. Sant, M.P. Coleman, S. Francisci, P. Baili, and D. Pierannunzio Cancer survival in Europe 1999-2007 by country and age: results of EUROCARE-5-a population-based study Lancet Oncol 15 1 2014 23 34
10. G. Gatta, L. Botta, S. Rossi, T. Aareleid, M. Bielska-Lasota, and J. Clavel Childhood cancer survival in Europe 1999-2007: results of EUROCARE-5-a population-based study Lancet Oncol 15 1 2014 35 47
11. Evaluation of clinical care by cancer registries. Sankila R, Black R, Coebergh JW, Demaret E, Forman D, Gatta G, Parkin DM, (eds.). IARC Technical Publication No. 37. IARC: Lyon; 2003.
12. Evaluation & monitoring of mass screening 2009 IARC Lyon
13. E. Riboli, K.J. Hunt, N. Slimani, P. Ferrari, T. Norat, and M. Fahey European Prospective Investigation into Cancer and Nutrition (EPIC): study populations and data collection Public Health Nutr 5 6B 2002 1113 1124
14. http://www.uicc.org/world-cancer-declaration.
15. http://www.encr.eu/.
16. http://www.encr.eu/index.php/activities/recommendations.
17. A. Gavin, B. Rous, R. Marcos-Gragera, R. Middleton, E. Steliarova-Foucher, and M. Maynadie Towards optimal clinical and epidemiological registration of haematological malignancies: guidelines for recording progressions, transformations and multiple diagnoses Eur J Cancer 51 2015 1109 1122
18. M. Hakama Evaluation of end results in cancer Duodecim 79 1963 393 400
19. F. Berrino, J. Estève, and M.P. Coleman Basic issues in estimating and comparing the survival of cancer patients IARC Sci Publ 132 1995 1 14 [Review]
20. H. Brenner, and O. Gefeller An alternative approach to monitoring cancer patient survival Cancer 78 9 1996 2004 2010
21. M.L. Janssen-Heijnen, A. Gondos, F. Bray, T. Hakulinen, D.H. Brewster, and H. Brenner Clinical relevance of conditional survival of cancer patients in Europe: age-specific analyses of 13 cancers J Clin Oncol 28 15 2010 2520 2528
22. http://eco.iarc.fr/.
23. E. Steliarova-Foucher, M. O'Callaghan, J. Ferlay, E. Masuyer, S. Rosso, and D. Forman The European cancer observatory: a new data resource Eur J Cancer 51 2015 1131 1143
24. M.P. Coleman, and E. Démaret Cancer registration in the European community Int J Cancer 42 3 1988 339 345
25. Storm, H, Clemmensen I, et al. Survey of cancer registries in the European Union. Technical report No 28. IARC: Lyon, 1998. p. 1-32.
26. L. Schouten Complete results of the follow-up survey of cancer registries in 1998 1999 ENCR Lyon p. 1-76
27. www.eurocourse.org.
28. http://www.tumori.net/eurochip/.
29. S. Siesling, A. Kwast, A. Gavin, P. Baili, and Otter R. EUROCHIP-3 Workpackage 5. Availability of stage at diagnosis, cancer treatment delay and compliance with cancer guidelines as cancer registry indicators for cancer care in Europe: results of EUROCHIP-3 survey Int J Cancer 132 12 2013 2910 2917
30. https://cinportal.iarc.fr.
31. http://www.rarecare.eu.
32. A. Gondos, F. Bray, D.H. Brewster, J.W. Coebergh, T. Hakulinen, and M.L. Janssen-Heijnen Recent trends in cancer survival across Europe between 2000 and 2004: a model-based period analysis from 12 cancer registries Eur J Cancer 44 10 2008 1463 1475
33. E. Steliarova-Foucher, P. Kaatsch, B. Lacour, V. Pompe-Kirn, S. Eser, and A. Miranda Quality, comparability and methods of analysis of data on childhood cancer in Europe (1978-1997): report from the Automated Childhood Cancer Information System project Eur J Cancer 42 13 2006 1915 1951 [Review]
34. E. de Vries, R. Micallef, D.H. Brewster, J.H. Gibbs, S.C. Flohil, and O. Saksela Population-based estimates of the occurrence of multiple versus first primary basal cell carcinomas in 4 European regions Arch Dermatol 148 3 2012 347 354 http://www.cancerresearchuk.org/cancer-info/spotcancerearly/ICBP
35. A. Anttila, S. Lönnberg, A. Ponti, E. Suonio, P. Villain, and J.W. Coebergh Towards better implementation of cancer screening in Europe through improved monitoring and evaluation and greater engagement of cancer registries Eur J Cancer 51 2015 1080 1081
36. M.R. Andersen, H.H. Storm on behalf of the Eurocourse Work Package 2 Group Cancer registration, public health and the reform of the European data protection framework: abandoning or improving European public health research Eur J Cancer 51 2015 1028 1038
37. Patient data for Health Research; 2011. http://www.medlaw.nl/?p=435.
38. J. Dillner A basis for translational cancer research on aetiology, pathogenesis and prognosis: guideline for standardised and population-based linkages of biobanks to cancer registries Eur J Cancer 51 2015 1018 1027