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Expert groups

Secondary data and mortality

Project goals

The expert group supports the development, utilisation and scientific analysis of secondary register and mortality data for the German National Cohort (NAKO). The primary data collected as part of the survey and examination of the NAKO participants are enriched in the data integration centres with routine data from the health insurance companies, the associations of statutory health insurance physicians and pension funds, the so-called secondary data. This is supplemented by mortality data, i.e. information on causes of death obtained from death certificates and clinical and forensic findings. The use of secondary, register and mortality data reduces the burden on the study participants, reduces the data collection effort and provides important information that cannot be reported with sufficient accuracy by the participants themselves. At the same time, these data increase the scientific value of the study, as the measurement and survey data are supplemented by valuable information that cannot be obtained in any other way.

Secondary data is checked and processed before it is fed into the study database. In addition, cancer registry data and the determination of the ‘vital status’ and causes of death are processed by the institutions responsible for cause of death statistics in the federal states.

The data is catalogued by the two competence units Competence Network Secondary and Registry Data and Mortality Follow-up.

The expert group takes on the following overarching tasks:

  • Supporting the study’s internal administrative and data protection processes
  • Coordination and standardisation of data evaluations
  • Participation in the definition of endpoints, the promotion of scientific publications and the support of third-party funding
  • Advising the Use & Access Committee of the NAKO
  • Processing scientific questions

Researchers can apply for the analysed data for scientific evaluation and link it to the NAKO primary data via a “record linkage”. If required, the expert group will provide initial advice on the selection of variables. Furthermore, the expert group supports research projects regarding the utilisation of secondary and mortality data, e.g. through webinars or the provision of manuals and other information material for potential users.

 

First results

The expert group and other NAKO expert groups are currently supporting methodological work in particular.

One focus is on the development of algorithms for determining specific endpoints, such as diabetes mellitus or myocardial infarction. Furthermore, specific methodological challenges in the preparation and analysis of secondary and mortality data are addressed. On the one hand, recommendations for data selection and analysis will be developed in the form of data manuals for researchers, and on the other hand, the analysed data will be evaluated with regard to possible distortions and varying data quality.

  • Ahrens, W, Pigeot, I,  Stallmann, C,  Swart, E. Record linkage of secondary data in the NAKO – overview of data sources with focus on health insurance claims data. European journal of public health – Oxford [u.a.]: Oxford Univ. Press, Bd. 33 (2023), Heft supplement_2, S. ii195, Artikel ckad160.500 DOI 10.1093/eurpub/ckad160.500
  • Jacobs, S, Ahrens, W,  Feißel, A,  Stallmann, C, Pigeot, I Durch Datenlinkage die Versorgungsrealität abbilden! – Ein kleiner Wegweiser zur Nutzung von GKV-Routinedaten im Rahmen von Kohortenstudien. Deutscher Kongress für Versorgungsforschung, 2017, 2017, DocP019, insges. 2 S. DOI 10.3205/17dkvf281
  • Stallmann, C,  Feißel, A,  Jacobs, S,  Swart, E Datenlinkage in der NAKO Gesundheitsstudie – die Möglichkeit regionaler und überregionaler Analysen mithilfe von Sekundärdaten gesetzlich und privat krankenversicherter StudienteilnehmerInnen. Deutscher Kongress für Versorgungsforschung, 2017, 2017, DocV137, insges. 2 S. DOI 10.3205/17dkvf083
  • Stallmann, C,  Feißel, A,  Swart, E Sekundärdaten in der NAKO Gesundheitsstudie – Erfahrungsbericht zur Qualitätssicherung von Abrechnungsdaten Privater Krankenversicherungen. Das Gesundheitswesen – Stuttgart [u.a.]: Thieme, Bd. 81.2019, 8/9, S. 705. DOI 10.1055/s-0039-1694484
  • Stallmann, C,  Swart, E Herausforderungen bei der Qualitätssicherung von Abrechnungsdaten Privater Krankenversicherungen im Rahmen der NAKO Gesundheitsstudie. 19. Deutscher Kongress für Versorgungsforschung: 30.09.-01.10 / Deutscher Kongress für Versorgungsforschung, 2020, 2020, Doc20dkvf063. DOI 10.3205/20dkvf063
  • Katzke V, Karpa F, Kaaks R. Federal-wide ascertainment of cancer in the German National Cohort results 2.0. Kooperationstagung der GMDS, DGSMP, DGEpi, DGMS und DGPH: 08.-13.09.2024, Dresden. DOI 10.3205/24gmds744
  • Katzke V, Karpa F, Nimptsch K, Kaaks R. Ascertainment and validation of incident cancers in the NAKO – focus on registries. 18. Jahrestagung DGEpi: 26. – 28.09.2023, Würzburg
  • Westerman R, Werdecker A, Mueller UO “The social gradient of “deaths of despair” in Germany: Evidence from the German National Cohort (NAKO) Mortality-Follow-Up Kooperationstagung der GMDS, DGSMP, DGEpi, DGMS und DGPH: 08.-13.09.2024, Dresden. DOI 10.3205/24gmds258

Publications

Jacobs, S, Stallmann, C, & Pigeot, I Verknüpfung großer Sekundär- und Registerdatenquellen mit Daten aus Kohortenstudien. Bundesgesundheitsblatt – Gesundheitsforschung – Gesundheitsschutz, (2015) 58, 822-828. DOI: 10.1007/s00103-015-2184-8

Kuss O, Becher H, Wienke A, et al. Statistical Analysis in the German National Cohort (NAKO) – Specific Aspects and General Recommendations. Eur J Epidemiol. 2022;37(4):429-436. doi:10.1007/s10654-022-00880-7

Mueller UO, Werdecker A, Westerman R, Hoffmann W. Mortalitäts-Follow-Up der Nationalen Kohorte – Ein neues Projekt am Bundesinstitut für Bevölkerungsforschung. Bevölkerungsforschung. 2015;6:2-2. 

Stallmann, C, Ahrens, W, Kaaks, R; Pigeot, I, Swart, E, Jacobs, S Individuelle Datenverknüpfung von Primärdaten mit Sekundär- und Registerdaten in Kohortenstudien: Potenziale und Verfahrensvorschläge. Gesundheitswesen 2015; 77(2): e37-e42. DOI: 10.1055/s-0034-1396805

Werdecker A, Mueller U. The pressing need for better statistics on youth mortality. Lancet Glob Health. 2021;9(4):e373-e374. doi:10.1016/S2214-109X(21)00080-2

Intemann T, Kaulke K, Kipker D-K et al. White Paper: Verbesserung des Record Linkage für die Gesundheitsforschung in Deutschland. Köln 2023. https://doi.org/10.4126/FRL01-006461895

Speakers

Prof. Dr. Wolfgang Ahrens
Prof. Dr. Ulrich Mueller (Deputy Spokesperson)