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Clin Genet. 2017 Sep;92(3):338-341. doi: 10.1111/cge.12984. Epub 2017 Mar 28.

The Danish HD Registry-a nationwide family registry of HD families in Denmark.

Author information

Department of Neurogenetics, Institute of Cellular and Molecular Medicine, The Panum Institute, University of Copenhagen, Copenhagen, Denmark.
The European Huntington's Disease Network, University of Ulm, Ulm, Germany.
Department of Biostatistics, Institute of Public Health, University of Copenhagen, Copenhagen, Denmark.
Department of Clinical Genetics, Aarhus University Hospital, Aarhus, Denmark.
Unit of Clinical Genetics, Department of Paediatrics, Zealand University Hospital, Roskilde, Denmark.
Department of Clinical Genetics, Vejle Hospital, Vejle, Denmark.
Department of Clinical Genetics, Odense University Hospital, Odense, Denmark.


The Danish Huntington's Disease Registry (DHR) is a nationwide family registry comprising 14 245 individuals from 445 Huntington's disease (HD) families of which the largest family includes 845 individuals in 8 generations. 1136 DNA and/or blood samples and 18 fibroblast cultures are stored in a local biobank. The birthplace of the oldest HD carrier in each of the 261 families of Danish origin was unevenly distributed across Denmark with a high number of families in the middle part of the peninsula Jutland and in Copenhagen, the capital. The prevalence of HD in Denmark was calculated to be 5-8:100 000. 1451 individuals in the DHR had the size of the HTT CAG repeat determined of which 975 had 36 CAG repeats or more (mean ± SD: 43,5 ± 4,8). Two unrelated individuals were compound heterozygous for alleles ≥36 CAGs, and 60 individuals from 34 independent families carried an intermediate allele.


Denmark; HTT CAG repeat; Huntington's disease; family registry

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