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Existing data sources for clinical epidemiology: Danish registries for studies of medical genetic diseases

Authors Nguyen-Nielsen M, Svensson E, Vogel I, Ehrenstein V, Sunde L

Received 14 March 2013

Accepted for publication 15 April 2013

Published 8 August 2013 Volume 2013:5(1) Pages 249—262

DOI https://doi.org/10.2147/CLEP.S45228

Checked for plagiarism Yes

Review by Single-blind

Peer reviewer comments 3


Mary Nguyen-Nielsen,1 Elisabeth Svensson,1 Ida Vogel,2 Vera Ehrenstein,1 Lone Sunde2

1Department of Clinical Epidemiology, Aarhus University Hospital, Denmark; 2Department of Clinical Genetics, Aarhus University Hospital, Denmark

Abstract: Denmark has an extensive collection of national and regional medical registries. There are many advantages to registry-based research when investigating genetic diseases which, due to their rarity, can be difficult to identify. In this study, we aimed to provide an updated overview of Danish registries for medical genetic conditions and describe how data linkage across registries can be used to collect data on genetic diseases at the individual level and at the family level. We present a list of medical genetic registries in Denmark at the national level, data sources from the departments of clinical genetics and other specialized centers, and project-specific data sources. We also summarize key general registries, such as the Danish National Registry of Patients, the Danish Medical Birth Registry, and the Civil Registration System, which are renowned for their comprehensive and high quality data, and are useful supplemental data sources for genetic epidemiology research. We describe the potential for data linkage across multiple registries, which allows for access to medical histories with follow-up time spanning birth to death. Finally, we provide a brief introduction to the Danish epidemiological research setting and legalities related to data access. The Danish collection of medical registries is a valuable resource for genetic epidemiology research.

Keywords: epidemiology, registry-based research, genetic disorders

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