Applied Clinical Informatics, Table of Contents Appl Clin Inform 2010; 01(04): 408-418DOI: 10.4338/ACI-2010-04-RA-0024 Research Article Schattauer GmbH Registers for networked medical research in GermanySituation and prospects J. Stausberg 1 Institut für Medizinische Informationsverarbeitung, Biometrie und Epidemiologie (IBE), Ludwig-Maximilians-Universität München, Germany , U. Altmann 2 Institut für Medizinische Informatik, Justus-Liebig-Universität Giessen, Germany , G. Antony 3 Kompetenznetz Parkinson, Marburg, Germany , J. Drepper 4 TMF – Technology, Methods, and Infrastructure for Networked Medical Research (acknowledged non-profit association), Berlin, Germany , U. Sax 5 Universitätsmedizin Göttingen, Germany , A. Schütt 4 TMF – Technology, Methods, and Infrastructure for Networked Medical Research (acknowledged non-profit association), Berlin, Germany› Author AffiliationsRecommend Article Abstract Full Text PDF Download Keywords KeywordsCompetence Networks - documentation - register protocol - registers References References 1 Dreyer NA, Garner S. Registries for robust evidence. JAMA 2009; 302: 790-791. 2 Brooke EM. The current and future use of registers in health information systems. Geneva: World Health Organization,; 1974 3 Mathis S, Wild C. Register für klinische und gesundheitsökonomische Fragestellungen: Einsatzbereiche von kardiovaskulären, wirbelsäulenspezifischen und neurologischen Registern und Good Practice Strategien für die Arbeit mit Registern. HTA_Projektbericht #11, 2008. Wien: Ludwig Boltzmann Institut für Health Technology Assessment,; 2008 4 Gladman DD, Menter A. Introduction/overview on clinical registries. Ann Rheum Dis 2005; 64 (II) ii101-ii102. 5 Bestehorn K. Medical Registries. Med Klin 2005; 100: 722-728 [in German]. 6 Leiner F, Haux R. Systematic planning of clinical documentation. Methods of Information in Medicine 1996; 35: 25-34. 7 Wegscheider K. Medical registries. Benefits and limitations. Bundesgesundheitsbl - Gesundheitsforsch -Gesundheitsschutz 2004; 47: 416-421 [in German]. 8 Gliklich R, Dreyer N. eds. Registries for Evaluating Patient Outcomes: A User’s Guide. AHRQ Publication No. 07-EHC001-1, April 2007. 9 Newton J, Garner S. Disease registers in England. A report commissioned by the Department of Health Policy Research Programme in support of the White Paper entitled Saving Lives: Our Healthier Nation. Oxford: Institute of Health Sciences, University of Oxford; 2002 10 Pommerening K. et al. Integrating eHealth and medical research: The TMF data protection scheme. In: Blobel B, Pharow P, Zvarova J, Lopez D. (Eds.): eHealth: Combining Health Telematics, Telemedicine, Biomedical Engineering and Bioinformatics to the Edge. Aka, Berlin: 2008: 5-10. 11 Nonnemacher M, Weiland D, Neuhäuser M, Stausberg J. Adaptive management of data quality in cohort studies and registers: proposal for a guideline. Acta Informatica Medica 2007; 15: 225-230. 12 Drolet BC, Johnson KB. Categorizing the world of registries. Journal of Biomedical Informatics 2008; 41: 1009-1020. 13 Winter A. et al. Integrated Information Systems for Translational Medicine. Meth Inf Med 2007; 46: 601-607. 14 Dugas M. et al. Single source information systems to connect patient care and clinical research. Stud Health Technol Inform. 2009; 150: 61-65. 15 Ohmann C, Kuchinke W. Future developments of medical informatics from the viewpoint of networked clinical research. Interoperability and integration. Methods Inf Med. 2009; 48: 45-54. 16 Raftery J, Roderick P, Stevens A. Potential use of routine databases in health technology assessment. Health Technology Assessment. 2005 9: (20) 17 Roovers JP. Registries: what level of evidence do they provide?. Int Urogynecol J Pelvic Floor Dysfunct. 2007; 18: 1119-1120. 18 Arts DG, De Keizer NF, Scheffer GJ. Defining and improving data quality in medical registries: a literature review, case study, and generic framework. J Am Med Inform Assoc 2002; 9: 600-611. 19 Silver FL. et al. International experience in stroke registries: lessons learned in establishing the Registry of the Canadian Stroke Network. Am J Prev Med. 2006; 31: S235-S237. 20 Evans SM, Bohensky M, Cameron PA, McNeil J. A survey of Australian clinical registries: can quality of care be measured?. Intern Med J. 2009 Oct 7. [Epub ahead of print]. 21 ISO/IEC 20000. Information technology - Service management. 2005-12-15. Geneva: ISO,; 2005
