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P001 JUVENILE HUNTINGTON’S DISEASE: PROGRAMME OF THE EURO-HD WORKING PARTY
O. W. J. Quarrell1,2, H. Brewer1,3 on behalf of the working party1Huntington’s Disease Association (England & Wales); 2Department of Clinical Genetics, Sheffield Children’s Hospital, Sheffield UK; 3School of Psychology, Birkbeck College, London University, London UK
Juvenile Huntington’s disease (JHD), defined as onset of the condition before the age of 20 years, is recognised as being at one end of the phenotypic spectrum seen in HD. In most surveys of HD, the percentage of cases meeting this definition varies between 2–10%. At any one time, many of those who had an onset in their late teenage years will be in their twenties; consequently, most professionals have limited experience of managing children/families in which the affected individual is still a child or teenager. The Euro-HD working party has identified three strands of work: firstly, to modify the UHDRS so that relevant tools are developed to monitor the natural history of JHD; secondly, to extend the qualitative research, assessing the impact of JHD from the perspective of the family, to different countries; thirdly, to organise a symposium or discussion group to increase the understanding and research base focused on the needs of this group of patients/families. Given the relative rarity of JHD, it is essential that the research activity is broadly based, especially if modified rating scales are to be widely adopted; to that end, we are seeking international collaborators to help with these strands of work.
P002 THE UK HUNTINGTON’S DISEASE NETWORK
J. J. Naji1, O. J. Handley1, P. S. Harper1,2, S. B. Dunnett1, A. E. Rosser1,2.1Cardiff University, Cardiff; 2University Hospital of Wales, Cardiff, UK
UKHDN Steering Committee: (Roger A Barker (Cambridge Brain Repair Group), Gillian Bates (King’s College, London), David Craufurd (University of Manchester, St Mary’s Hospital, …