Other useful resources

The European Huntington's Disease Network Physiotherapy Working Group comprises an international community of (predominantly)  physiotherapists, who have collaborated for over 10 years, in which time they have developed clinical practice guidelines and recommendations amongst other resources to support clinicians and the people in the HD community. The guidelines and other resources are available on the physiotherapy working group page of the EHDN website here.

The development of PAT-HD: A co-designed tool to promote physical activity in people with Huntington's Disease

We recognised that healthcare professionals may need support in helping people with Huntington’s disease (HD) to be more physically active. We therefore aimed to design a tool that could be used by healthcare professionals to discuss physical activity and set physical activity goals and plans. 

We worked with a company that specialised in visual materials, people with HD and their families and carer and healthcare professionals to create a simple tool that could be used by healthcare professionals. Three healthcare professionals then piloted the use of the tool in their HD clinic.  

The three healthcare professionals were interviewed after using the tool for nine months. Themes arising from the interviews included: People i.e. the healthcare professional using the tool and the specific needs of the person with HD. Setting i.e. advantages and disadvantages of using the tool in a specific HD clinic compared to use in the community. Approach i.e. the value of the tool in enabling an individualised approach to making physical activity goals and plans. 

Following the interviews, the tool was finalised as the Physical Activity Tool for people with Huntington’s disease – PAT-HD. 

The study concluded that collaborative projects including people with HD could be carried out to produce resources that were beneficial for the HD community. Further work could be carried out for people with other conditions. 

A freely accessible online resource designed by the Physiotherapy Working Group of the European Huntington's Disease Network to support more active lifestyles in HD.

Suitable to be used alongside the 'Move to Exercise' resources which can be found on the Active HD YouTube Channel, the ENGAGE-HD research project produced a physical activity workbook to help people plan regular physical activity with support from their physiotherapist to stay active and set goals. Read more about the ENGAGE-HD project here.

Step-by-step exercise videos for someone with Huntington's Disease, which can be found on the Active HD YouTube Channel here.