Čeština | Dansk | Deutsch | English | Español | Français | Italiano | Nederlands | Norsk | Polski | Português | Pусский | Suomi | Svenska | US
Euro Huntington's disease network [logo]
EHDN2016 MALATTIA NETWORK REGISTRY PROJECTS LOGIN
 
 
  
Working Groups - Physiotherapy -
--->News
[-]Il Progetto
--->Sponsor
--->[+]Executive Committee
--->[+]Writing Committee Strategic ...
--->[+]Scientific and Bioethics Advis...
--->Central Coordination
--->Language Coordination
--->Fellowship Programme
--->[+]Constitution
--->[+]Voting/Nomination
--->[-]Members
--->Request
[-]Località
--->[+]Austria
--->[+]Belgium
--->[+]Czech Republic
--->[+]Denmark
--->[+]Finland
--->[+]France
--->[+]Germany
--->[+]Ireland
--->[+]Italy
--->[+]Netherlands
--->[+]Norway
--->[+]Poland
--->[+]Portugal
--->[+]Russia
--->[-]Spain
--->Coordination
--->HD Associations
--->Alicante
--->Badajoz
--->Barcelona - Bellvitge
--->Barcelona - Clinic i Provincia...
--->Barcelona - Mutua de Terra...
--->Barcelona - Santa Creu i Sa...
--->Barcelona - Merced
--->Bilbao
--->Burgos
--->Canaries
--->Granada
--->Fuenlabrada
--->[+]Madrid-BTCIEN
--->Madrid - Clínico
--->Madrid - FJD
--->Madrid - RyC
--->Murcia
--->Oviedo
--->Palma de Mallorca
--->Pamplona
--->Santiago
--->Sevilla
--->Sevilla-HUVRocio
--->Sevilla-St-Ana
--->Valencia
--->Zaragoza
--->[+]Sweden
--->[+]Switzerland
--->[+]U.K.
--->[+]Outside Europe
[-]Gruppi di lavoro
--->[+]Advanced HD
--->[+]Behavioural Phenotype
--->[+]Biological Modifiers
--->[+]Biomarkers
--->[+]Brain and Tissue Banking
--->[+]Cognitive Phenotype
--->[+]Environmental Modifiers
--->[+]Functional Ability
--->[+]Genetic Testing
--->[+]Genetic Modifiers
--->[+]Health Economics
--->[+]Imaging
--->[+]Juvenile HD
--->[+]Motor Phenotype
--->[+]Neuroprotective Therapy
--->[-]Physiotherapy
--->Dates
--->[+]Meetings
--->[+]Quality of Life
--->[+]Standard of Care
--->[+]Surgical Approaches
--->[+]Symptomatic Research
--->[+]Young Adults
[-]Events
--->[-]EHDN 2016
--->Announcement
--->Introduction
--->Registration
--->Programme Fri
--->Programme Sat
--->Programme Sun
--->Additional Meetings
--->Floor plan
--->[+]Overduin Registration
--->CME points
--->Sponsoring
--->Travel Information
--->Hotel booking
--->Social activities
--->Reimbursement
--->[+]Abstract Submission
--->Contacts
--->Documents
--->Feedback
--->EHDN 2014
--->Announcement
--->Introduction
--->Registration
--->Programme Fri
--->Programme Sat
--->Programme Sun
--->Additional Meetings
--->CME points
--->Sponsoring
--->Travel Information
--->Hotel Booking
--->Reimbursement
--->Social Activities
--->[+]Abstract Submission
--->Contacts
--->Feedback
--->[-]EHDN 2012
--->Introduction
--->Announcement
--->Programme Fri
--->Programme Sat
--->Programme Sun
--->Additional Meetings
--->Important Dates
--->Registration
--->[+]Travel & Accommodation
--->[+]EHA Registration
--->EHA Programme
--->Reception Dinner
--->About Stockholm
--->[+]Abstract Submission
--->Reimbursement
--->[+]Documents
--->Contacts
--->Feedback & Evaluation
--->[-]EHDN 2010
--->Introduction
--->Programme I
--->Programme II
--->Additional Meetings
--->Registration
--->EHA Programme
--->[+]EHA Registration
--->Plenary Dinner
--->Social Programme
--->Important Dates
--->[+]Abstract Submission
--->Reimbursement
--->Hotel Booking
--->[+]Travel and Location
--->[+]About Prague
--->Documents
--->Committees
--->Contact
--->Feedback & Evaluation
--->[-]EHDN 2008
--->Programme
--->Additional Meetings
--->EHA Programme
--->Social Programme
--->Kids Programme
--->Important Dates
--->Voting
--->Reimbursement
--->[+]Registration
--->[+]Abstract Submission
--->Evaluation & Feedback
--->[+]Travel and Location
--->[+]About Lisbon
--->[+]Documents
--->Committees
--->Contact
--->[+]EHDN 2007
--->[-]EHDN 2006
--->Introduction
--->Final Programme
--->Plenary Dinner
--->Meeting Venue
--->[+]About Blankenberge
--->[-]EHDN 2005
--->Final Programme
--->Plenary Dinner
--->Registration
--->Working Groups
--->Meeting Venue
--->Manchester
--->Evaluation & Feedback
--->[+]EHDN 2004
[+]Comunicazioni
--->Offerte di lavoro

Background

The community of people working with HD, including physiotherapists, allied health professionals and caregivers, need an in-depth understanding of the nature of Huntington’s Disease and how to best facilitate independence and quality of life for people with HD. Definitions of the range of restorative, compensatory and preventative physiotherapy intervention options are being developed but need more research.  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 Working Group (PWG) aims to support allied healthcare professionals, care givers and people with HD and to this end has, over the last 6 years, developed guidelines for physiotherapy evaluations and intervention, standardised outcome measures and provide clinical tips to facilitate independence in HD. Many members have been involved in designing high quality trials that have lead to more evidence for provision of physiotherapy interventions in HD.
The PWG aims to engage Physiotherapists and other allied healthcare professionals working with people with HD to work collaboratively and disseminate output particularly related to Physical Activity/ exercise in HD, which will lead to positive impact for healthcare professionals and caregivers in the HD community.
The Physiotherapy Working Group is aligned with the Motor Phenotype and Standard of Care Working Groups. The lead facilitators of the group are Katy Hamana (debonok1@cf.ac.uk) and Karen Jones (joneskj@cf.ac.uk).

Completed projects

paragraph image
link magnifier
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. Date of publication of first edition: February 2010.

Please send any feedback on content of this document to the lead facilitators of the working group.
application/mswordphysiotherapy-guidance-doc-2009 
To order your personal copy of the brochure write an email to

EHDN Physiotherapy Guidance short document

application/mswordphysiotherapy-clinical-guidelines-en 

Please find below the French short version of the EHDN Physiotherapy Guidance document.

paragraph image
Voici ci-dessous la version courte en français du Guide de Physiothérapie EHDN. Si vous désirez écrire vos commentaires en français, merci de les envoyer à Laurent Paterski (laurent@euro-hd.net), coordinateur France-Suisse-Belgique.
application/mswordFrench version 

Kliniske Retningslinjer for Fysioterapi ved Huntingtons Sygdom

application/mswordDanish version 

Nederlandse versie van de fysiotherapie richtlijnen bij de Ziekte van Huntington

application/msworddutch-version 

Anbefalte Retningslinjer for Klinisk Fysioterapi

application/mswordNorwegian version 

Linee guida cliniche di fisioterapia per la malattia di Huntington

application/mswordItalian version 

German version of clinical physiotherapy guidelines

application/mswordGerman version 

Eurooppalainen Huntingtonin taudin tutkijaverkosto (EHDN) Fysioterapia-työryhmä

application/mswordFinnish version 
 
Registry Version 3 Physiotherapy Outcome Measures Study
Dr. Monica Busse, Dr Lori Quinn, EHDN Physiotherapy Working Group (multi-centre)
Funded by European Huntington’s Disease Network

The purpose of this project was to determine the reliability and minimal detectable difference of various outcome physiotherapy for people measures that are potentially suitable for evaluating the benefits of with HD. We recruited 75 people with Huntington’s disease in various stages of the disease across 7 international sites. All participants completed two assessments, with a one-week gap between, on a battery of functional outcome measures. Measures were chosen to reflect a range of impairments, activity limitations and participation restrictions seen in people with HD that may be potentially modifiable with physiotherapy intervention.

Related publications:

New Projects

Education: E-learning resource
The purpose of this project is to develop an accessible resource for caregivers and people with HD to learn about promotion of Physical activity in HD. The format of the resource and a template module is currently being developed by the leads for project (Deb Kegelmeyer and Karen Jones) with ongoing consultation from members of PWG. This is to be presented at the next PWG meeting in May 2015 for discussion. Following the meeting, components of the resource will be developed by sub-groups formed within the PWG. The timeline for completion of this project will be agreed at the meeting in May 2015.

Ongoing projects

Clinical Case Studies
These have been developed by members of the Physiotherapy Working Group to aid in the assessment and treatment planning of individuals with HD across all stages of the disease. These cases follow the treatment-based classifications developed by the working group (Quinn, Busse & Physiotherapy Working Group, 2012). The case studies completed to date can be found at: https://healthcarestudies.cf.ac.uk/ActiveHD/case-studies/

International Research Summaries
The Active-HD website has a page dedicated to International Research Summaries which the Physiotherapy Working Group continue to develop by providing research summaries from international studies, both peer-reviewed papers and abstracts, related to physical therapy and exercise in Huntington’s disease. It is important to continue to develop this as an informative resource for people in the HD community including PWG members, carers, clinicians and people with HD.

Links

Contacts

Lead Facilitators

Katy Hamana
Physiotherapist, Research Assistant
School of Healthcare Sciences
College of Biomedical and Life Sciences
Cardiff University
Tŷ Dewi Sant
Heath Park
Cardiff

CF14 4XN
Tel: +44 (029)20 687841
Email:

Karen Jones
Lecturer in Physiotherapy,
MSc Physiotherapy Programme Manager
School of Healthcare Sciences
College of Biomedical and Life Sciences
Cardiff University
Ty Dewi Sant
Heath Park
Cardiff
CF14 4XN

Tel: +44 (029) 20687789
Email:

Associated Language Area Coordinator (Lanco)

, UK
Paola Zinzi, IT (backup Lanco)

Membership

The Physiotherapy Working Group has currently 55 members (October 2014), including physiotherapists based in the UK, Sweden, Norway, Finland, Portugal, Spain, Switzerland, 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.
about us | privacy statement | disclaimer | terms of use