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

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

Acknowledgments

This study received funding from the Department of Clinical Epidemiology Research Foundation. Our sincere thanks are extended to the following people for their help in collecting information for this project: Jette Ørsted (Department of Clinical Genetics, Aarhus University Hospital), Sven Asger Sørensen (Institute for Cellular and Molecular Genetics, Panum Institute, Copenhagen University), Thomas Rosenberg (The National Eye Clinic, Kennedy Center, Copenhagen), Inge Bernstein (HNPCC-registry Clinical Research Center, Hvidovre Hospital), Hanne Buciek Hove (Department of Clinical Genetics, Rigshospitalet), Oluf Schiøtz (Department of Pediatrics, Aarhus University Hospital), Hanne Vebert Olesen (Department of Pediatrics, Aarhus University Hospital), Susanne Møller (Danish Breast Cancer Cooperative Group), Niels Jespersen (Department of Gastric Surgery, Hvidovre Hospital), Søs Marie Luise Bisgaard (Cellular and Molecular Medicine, Panum Institute, Copenhagen University), Marie Louise Mølgaard Binderup (Cellular and Molecular Medicine, Panum Institute, Copenhagen University), Charlotte Kvist Lautrup (Department of Clinical Epidemiology, Aarhus University Hospital), Allan Meldgaard Lund (Clinic for Rare Handicaps, Rigshospitalet), Ann Tabor (Center for Fetal Medicine and Pregnancy, Department of Obstetrics, Rigshospitalet), Mette Sommerlund (Department of Dermatology, Aarhus University Hospital), Anette Bygum (Department of Dermatology, Odense University Hospital), Stense Farholt (Centre for Rare Diseases and Department of Pediatrics, Aarhus University Hospital), Hans Gjørup (Centre for Oral Health in Rare Diseases, Aarhus University Hospital), Anne-Marie Gerdes (Department of Clinical Genetics, and the Clinic for Rare Handicaps, Rigshospitalet, Copenhagen), Karen Brøndum-Nielsen (Kennedy Center, Copenhagen), Michael B. Petersen (Department of Clinical Genetics, Aalborg University Hospital), Jette Daugaard-Jensen (Centre for Rare Oral Diseases, Odontologisk Videncenter, Copenhagen), Lotte Nylandsted Krogh (Department of Clinical Genetics, Odense University Hospital), Anders Bojesen (Department of Clinical Genetics, Vejle Hospital), Jens Michael Hertz (Department of Clinical Genetics, Odense University Hospital) and Camilla Daasnes (Data Protection Agency).

Disclosure

The authors declare no conflicts of interest in this work.