Background

The constellation of signs and symptoms associated with the evolution of Huntington’s disease significantly influences how individuals handle the everyday tasks and activities in life. Therefore, assessment of functional ability is important in the management of patients, and is a key outcome measure in clinical intervention research.

Description

The overall goal of this working group is to improve the assessment of functional ability. Members of the group contribute from various perspectives, bringing their experience, clinical expertise, research skills to work collaboratively towards this goal. The group also has collaborative links with other EHDN (e.g. Motor, Cognitive, Behavioural Phenotype WGs) and international working groups (e.g. PREDICT-HD, FuRST).

Current projects

We are currently working towards:

1. Refining existing questionnaire-based functional assessments.
2. Investigating the utility of simple tasks and performance-based methods in evaluating functional ability.

Membership

At present, this new Functional Ability Working Group has fifteen members (June 2008) with representation from England, Wales, Germany, Spain, Italy, the Netherlands, and USA. The group comprises an interdisciplinary mix of people united by a common interest in how people across the spectrum of Huntington’s disease function outside of the clinic, in their day to day lives. We invite researchers, statisticians, clinicians and allied health professionals (e.g. occupational therapists, speech therapists, specialist nurses, support workers, etc) with similar interests to join us and to contribute to this new working group.

People with a clinical or research interest in this area who would like to participate are welcomed; please contact   .

, Poland