Clinical Research; Research Networks; Laboratory Based Research


Here in Cardiff we act as the co-ordination hub for a number of HD networks:

UKHDN
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Established in January 2003, the United Kingdom Huntington’s disease Network (UKHDN) brought clinicians and basic scientists together in order to work towards effective management and treatment of people at-risk of or affected by, Huntington’s disease. The aims of the UKHDN are twofold; first, to establish a large cohort of well-characterised patients with a view to rapid implementation of clinical trials as and when new therapies emerge; and second, to facilitate clinical studies aimed at increasing understanding of the disease processes underlying the neural damage seen in Huntington’s disease. Co-ordination of the network is based at Cardiff University, UK, where management and communication of the network activities is carried out for over 20 UK-based member sites. The UKHDN co-ordinator is Dr Jenny Naji based at Cardiff University, Cardiff. The UKHDN was founded with financial support from the Dunhill Trust as well as a range of specific project grants and awards. The UKHDN is very much involved with the activities of the EHDN. Most of the UKHDN study sites and members are also working in collaboration with the EHDN.

EUROPEAN HD NETWORK
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The European HD Network was established in 2004. It aims to unite clinicians, scientists, health care professionals, and those at risk of and affected by the disease to work together on a European scale. The hope is to develop existing networks and introduce a registry of those at risk of or affected by Huntington’s disease. Once this registry is in place, it should help to facilitate a number of research initiatives including the implementation of large-scale clinical trials. In the UK, the central location for EHDN takes place in Cardiff. To overcome the language barriers, the EHND has established coordination centres according to the different European languages. The English-speaking coordination centre for EHDN takes place in Cardiff. Jenny Naji and Olivia Handley (co-ordinators) work closely with members of the public, the UK network members and the European co-ordination in order to communicate progress and development of the network. For more information about EHDN please visit the website www.euro-hd.net or contact the UK co-ordinators.

PRESYMPTOMATIC CONSORTIUM FOR HUNTINGTON'S DISEASE
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The presymptomatic consortium is a UK-based network of health care professionals, clinicians (mainly geneticists and genetic nurse counsellors) and researchers who work with family members at risk for Huntington’s disease. The aim of the group is to discuss issues surrounding the predictive tests taken each year including the number of tests taken, the results, counselling techniques and how to deal with ethically difficult situations. Co-ordination of this network takes place from Cardiff, where Mrs Ruth Glew, our Genetic Nurse Specialist organises the annual events and clinical database.

We participate in a number of other clinical research networks, including DenDRon and Nectar. Please visit their websites for more information: 


NECTAR

DeNDRoN