title: [Individual linkage of primary data with secondary and registry data within large cohort studies - capabilities and procedural proposals].
abstract: Some German cohort studies have already linked secondary and registry data with primary data from interviews and medical examinations. This offers the opportunity to obtain more valid information by taking advantage of the strengths of these data synergistically and overcome their individual weaknesses at the same time. The potential and the requirements for linking secondary and registry data with primary data from cohort studies is described generally and illustrated by the example of the "German National Cohort" (GNC). The transfer and usage of secondary and registry data require that administrative and logistic efforts be made over the whole study period. In addition, rigid data protection regulations for using social data have to be observed. The particular strengths of secondary and registry data, namely their objectivity and independence from recall bias, add to the strengths of newly collected primary data and improve the assessment of morbidity endpoints, exposure history and need of patient care. Moreover, new insights on quality and on the added value of linking different data sources may be obtained.
authors.affiliation: Institut für Sozialmedizin und Gesundheitsökonomie, Med. Fakultät, Otto-von-Guericke-Universität Magdeburg, Magdeburg.
authors.forename: C
authors.initials: C
authors.lastname: Stallmann
authors.affiliation: BIPS Bremen, Leibniz-Institut für Präventionsforschung und Epidemiologie, Bremen.
authors.forename: W
authors.initials: W
authors.lastname: Ahrens
authors.affiliation: DKFZ Heidelberg, Deutsches Krebsforschungszentrum Heidelberg, Heidelberg.
authors.forename: R
authors.initials: R
authors.lastname: Kaaks
authors.affiliation: BIPS Bremen, Leibniz-Institut für Präventionsforschung und Epidemiologie, Bremen.
authors.forename: I
authors.initials: I
authors.lastname: Pigeot
authors.affiliation: Institut für Sozialmedizin und Gesundheitsökonomie, Med. Fakultät, Otto-von-Guericke-Universität Magdeburg, Magdeburg.
authors.forename: E
authors.initials: E
authors.lastname: Swart
authors.affiliation: BIPS Bremen, Leibniz-Institut für Präventionsforschung und Epidemiologie, Bremen.
authors.forename: S
authors.initials: S
authors.lastname: Jacobs
mesh_terms: D015331:Cohort Studies; D003219:Confidentiality; D000068598:Data Accuracy; D057286:Electronic Health Records / Q000458:organization & administration*; D005240:Feasibility Studies; D005858:Germany; D016247:Information Storage and Retrieval / Q000379:methods*; D062527:Meaningful Use / Q000458:organization & administration; D008498:Medical Record Linkage / Q000379:methods*; D012042:Registries / Q000706:statistics & numerical data*