[Memorandum registry for health services research].
On August 30, 2010, the German Network for Health Services Research [Deutsches Netzwerk Versorgungsforschung e. V. (DNVF e. V.)] approved the Memorandum III "Methods for Health Services Research", supported by their member societies mentioned as authors and published in this Journal [Gesundheitswesen 2010; 72: 739-748]. Registries in Health Services Research vary in their aims and research questions as well as in their designs, methods of data collection, and statistical analyses. This paper aims to provide both a methodological guideline for developers to ensure a high quality of a planned registry and, to provide an instrument for users of data from registries to assess their overall quality. First, the paper provides a definition of registries and presents an overview of objectives in Health Services Research where registries can be useful. Second, several areas of methodological importance for the development of registries are presented. This includes the different phases of a registry (i. e., conceptual and preliminary design, implementation), technical organisation of a registry, statistical analysis, reporting of results, data protection, and ethical/legal aspects. From these areas, several criteria are deduced to allow the assessment of the quality of a registry. Finally, a checklist to assess a registry's quality is presented.
Müller
D
D
Institut für Forschung in der Operativen Medizin, Universität Witten-Herdecke.
Augustin
M
M
Deutsche Dermatologische Gesellschaft (DDG), Berufsverband der Deutschen Dermatologen, Universitätsklinikum Hamburg-Eppendorf
Banik
N
N
GlaxoSmithKline GmbH & Co. KG, München
Baumann
W
W
Wissenschaftliches Institut der Niedergelassenen Hämatologen und Onkologen GmbH (WINHO), Köln
Bestehorn
K
K
MSD SHARP & DOHME GMBH, Haar
Kieschke
J
J
Berliner Herzinfarktregister, Innovationszentrum Technologien für Gesundheit und Ernährung, TU Berlin
Lefering
R
R
Institut für Forschung in der Operativen Medizin, Universität Witten-Herdecke.
Maier
B
B
Berliner Herzinfarktregister, Innovationszentrum Technologien für Gesundheit und Ernährung, TU Berlin
Mathis
S
S
Ludwig Boltzmann Institut Health Technology Assessment, Wien
Rustenbach
S J
SJ
Niedersächsisches Landesgesundheitsamt, Hannover
Sauerland
S
S
Institut für Forschung in der Operativen Medizin, Universität Witten-Herdecke.
Semler
S C
SC
Telematikplattform für Medizinische Forschungsnetze e. V. (TMF), Berlin
Stausberg
J
J
Telematikplattform für Medizinische Forschungsnetze e. V. (TMF), Berlin|Institut für Medizinische Informationsverarbeitung, Biometrie und Epidemiologie, Ludwig-Maximilians-Universität, München
Sturm
H
H
Südwestdeutsches Tumorzentrum, Universitätsklinikum Tübingen; Schwenninger BKK, Schwenningen
Unger
C
C
Epidemiologisches Krebsregister Niedersachsen, Hannover|Niedersächsisches Landesgesundheitsamt, Hannover
Neugebauer
E A M
EA
Institut für Forschung in der Operativen Medizin, Universität Witten-Herdecke.
D003625:Data Collection / Q000706:statistics & numerical data; D005858:Germany; D006302:Health Services Research / Q000706:statistics & numerical data*; D006801:Humans; D012042:Registries / Q000706:statistics & numerical data*; D012107:Research Design / Q000706:statistics & numerical data