HD register – University of Copenhagen

The Danish Huntington Register

The Danish HD Register is at the Section of Neurogenetics, Department of Cellular and Molecular Medicine, University of Copenhagen.

The register is nationwide and was started in 1970 by Sven Asger Sørensen and Kirsten Fenger based on data originally collected by Dr. Sigurd Petersen (born 17.04.1902) in the early 1940s.

By 2001 the Register comprises 318 families with a total of 10615 individuals.
There are 1390 affected individuals and 2991 individuals with an a priori risk of 50% among which 219 and 1218, respectively, are alive.

Many of the families have been traced back to the beginning of the 19th century, the largest one containing 774 individuals. Both affected individuals and persons with a Mendelian risk greater than 12.5% are registered.

Most of the families registered are of Danish origin, but we also have families which originates from Norway, Sweden, England, Holland, and the US.
The register is in current use for genetic counselling and research.

In close connection with the HD register we have a DNA bank which contains samples collected for research and for diagnostic purposes.
All diagnostic, presymptomatic, and prenatal analyses for HD (and other CAG-repeat disorders) in Denmark are done in our laboratory.

The register is a closed register, i.e. only a limited number of persons have admission to it, and all data are confidential.
Both the register and the DNA bank have been approved by Registertilsynet , the Scientific Ethical Comittee, and the Danish Huntington League Association.