European HD Registry - A pioneering international observational study

REGISTRY is a European wide study collecting longitudinal clinical data to better understand Huntington disease. We have been involved since its start in 2005 and are one of the most active sites in Europe, with over 400 participants. The study of complementary aspects of HD is aimed at finding disease modifiers and potential targets for novel treatments. In addition the collaboration of European HD Network researchers helps develop new research and clinical tools.

Researchers from Manchester have been at the centre of the production of the Problem Behaviours Assessment for HD (PBA-HD) and its shortened version. PBA-s are widely used to assess psychiatric symptoms. We help train clinicians and researchers to assess behavioural and cognitive symptoms, and have played a significant role in the development of standardised cognitive assessment manuals. Additionally we are involved in the collaborative development and elaboration of genetic testing guidelines.

This year REGISTRY is ‘going global’ and will transfer into an initiative called Enroll-HD, incorporating researchers from the USA, Latin America, Singapore, South Africa, and South Korea. All research participants currently involved in REGISTRY will be encouraged to participate in this new worldwide initiative.

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