Data from Population-based Cancer Registration for Secondary Data Analysis: Methodological Challenges and Perspectives

被引:18
作者
Arndt, Volker [1 ,2 ]
Holleczek, Bernd [3 ]
Kajueter, Hiltraud [4 ]
Luttmann, Sabine [5 ]
Nennecke, Alice [6 ]
Zeissig, Sylke Ruth [7 ]
Kraywinkel, Klaus [8 ]
Katalinic, Alexander [9 ,10 ,11 ]
机构
[1] Deutsch Krebsforschungszentrum, Epidemiol Krebsregister Baden Wurttemberg, Neuenheimer Feld 280, D-69120 Heidelberg, Germany
[2] Deutsch Krebsforschungszentrum, AG Canc Survivorship, Abt Klin Epidemiol & Alternsforsch, Heidelberg, Germany
[3] Krebsregister Saarland, Saarbrucken, Germany
[4] Epidemiol Krebsregister NRW gGmbH, Bochum, Germany
[5] BIPS GmbH, Bremer Krebsregister, Leibniz Inst Pravent Forsch & Epidemiol, Bremen, Germany
[6] Hamburg Krebsregister, BGV, Hamburg, Germany
[7] Krebsregister Rheinland Pfalz gGmbH, Mainz, Germany
[8] Zentrum Krebsregisterdaten ZfKD, Robert Koch Inst, Berlin, Germany
[9] Univ Lubeck, Inst Krebsepidemiol eV, Krebsregister Schleswig Holstein, Lubeck, Germany
[10] Univ Lubeck, Inst Sozialmed & Epidemiol, Lubeck, Germany
[11] GEKID eV, GEKID Working Grp, Lubeck, Germany
关键词
cancer registration; epidemiology; secondary data; data quality; data sources; RECORD LINKAGE ERRORS; TIME BIAS; SURVIVAL; REGISTRIES; COMPLETENESS;
D O I
10.1055/a-1009-6466
中图分类号
R1 [预防医学、卫生学];
学科分类号
1004 ; 120402 ;
摘要
Population-based cancer registries have a long-standing role in cancer monitoring. Scientific use of cancer registry data is one important purpose of cancer registration, but use of cancer registry data is not restricted to cancer registries. Cancer registration in Germany is currently heading towards population-based collection of detailed clinical data. This development together with additional options for record linkage and long-term follow-up will offer new opportunities for health services and outcome research. Both regional population-based registries and the German Centre for Cancer Registry Data (ZfKD) at the Robert Koch-Institute as well as international cancer registries and consortia or organizations may provide external researchers access to individual or aggregate level data for secondary data analysis. In this review, we elaborate on the access to cancer registry data for research purposes, availability of specific data items, and options for data linkage with external data sources. We also discuss as well as on limitations in data availability and quality, and describe typical biases in design and analysis.
引用
收藏
页码:S62 / S71
页数:10
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