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Euro Huntington's disease network [logo]
Working Groups - Standard of Care -

Description

There is very little medical literature on the care of the Huntington's patient. This partly reflects the fact that in many countries there are no designated clinics for this patient group, and within some countries the care provided varies widely (Simpson, 2004). Systematic clinical guidelines for care have not been developed since the evidence for any particular best practice is lacking.

Some studies have shown that simply attending for review as part of a research study produces an improvement in some areas of the HD disease process. Over the last 15 years, I have been running a management clinic to care for those affected by HD, and those who have the mutation for the disease.  Regular attendance to monitor progression of the neurological features, drug treatment of movement disorder, chest signs, swallowing and circumstances of care appear to have improved quality of life and reduced crisis management. Mutation carriers are seen to monitor for commencement of disease, and to involve them in research at their request.

Knowledge of the pathophysiology of Huntington's disease is an essential component of the research into its cause and prevention. Without detailed clinical information, these data cannot be collected. Regular assessment and documentation of stage of disease is essential for this process. Any trial of therapy or preventative tool will depend on the ability to properly compare progress before and after intervention. Management review clinics allow for the collection of such data.

In addition it is clear that those who are as yet asymptomatic, but who have the mutation of HD, are rarely offered comprehensive follow up and assessment. This is an important group and their needs are significant. Information about research programmes and testing of pregnancies are but two of the issues raised by them.

This project is to document practice, and the different approaches around Europe to the management of HD with a view to developing evidence based guidelines for best practice.

Standard of Care Guidelines

 

Lead facilitator:

Mrs Daniela Rae
Research Nurse, Study Site Administrator Motor Rater Cognitive Rater Psychiatric Behavioural Rater
NHS Grampian, Medical Genetics, Ground Floor, Ashgrove House
Postal address: Foresterhill
AB25 2ZA Aberdeen
U.K.
phone: +44 1224 552120
fax: +44 1224 559390
e-mail: 

Associated Language Area Coordinator (Lanco)

, Germany

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