Background

An evidence-based rationale for the development and evaluation of complex physiotherapy interventions is required to confirm the common perception that physiotherapy is beneficial in HD. The physiotherapy community needs an in-depth understanding of the nature of patients’ problems and the preliminary data to calculate appropriate sample sizes. Clear definitions of the range of restorative, compensatory and preventative physiotherapy intervention options are also needed.

Description

The Physiotherapy Working Group aims to develop guidelines for physiotherapy evaluations and intervention by describing current and best practice, consulting on appropriate, standardised outcome measures and ultimately designing high quality trials that may lead to more support and evidence for provision of physiotherapy interventions in HD. The Physiotherapy Working Group is aligned with the Motor Phenotype and Standard of Care Working Groups.

EHDN Guidelines for Physiotherapists

This Physiotherapy Guidance Document is an evidence-based document that aims to enable international uniformity of care and inform the optimal, individualised physiotherapeutic management of people with HD. Recommendations were formulated based on a systematic approach to gathering and reviewing currently available literature as well as gathering expert consensus from within the EHDN Physiotherapy Working Group. The final document continues to be a work in progress, with plans to review and update the document as new research becomes available. Date of publication of first edition: February 2010.

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Please send any feedback on content of this document to the lead facilitators of the working group.

Current project

The working group focuses on the following project:

1. Evaluation of reliability and minimum detectable change in a battery of physiotherapy related outcome measures. This will preferably be a multi-site project. The outcome measures study will be linked to the EHDN REGISTRY Project.

Study protocols are currently being developed. Subject eligibility, recruitment, assessment, and data collection processes will be determined as part of this development.

Membership

The Physiotherapy Working Group has currently 24 active members (June 2008), including physiotherapists based in the UK, Sweden, Norway, Germany, Italy and USA.
The aims of the working group can best be met by the coordination of input from a network of people with an expertise and/or interest in physiotherapy and rehabilitation for people with HD. Any clinicians with an interest or expertise in HD, as well as in rehabilitation or physiotherapy, are welcome to join the group.