ACTIVE-HD works to promote exercise and activity in Huntington’s disease (HD) through research and collaboration.
We work closely with world leading international groups and the European Huntington’s Disease Network's Physiotherapy working group to support research and clinical efforts within the area of physiotherapy and physical activity in Huntington’s disease (HD).
Our pioneering research has shown exercise to be a successful and innovative new element in HD treatment, and we are developing and validating new methods in preparation for future trials in regenerative medicine.
We have generated strong evidence in trials which showed improvement in people with HD. One of our earliest trials was focussed on Move to Exercise, an exercise DVD developed for people with HD. This was followed by a trial that established the safety and feasibility of a community based exercise programme.
More recently, the ExeRT-HD trial helped us to demonstrate that a short-term exercise programme is safe, feasible, and most importantly led to improvements in fitness and motor function in people with HD.
Given that people with HD may have difficulty taking part in physical activity, we also developed the ENGAGE-HD Physical Activity Programme. This combined the Move to Exercise DVD, the ENGAGE-HD Physical Activity Workbook and physical activity coaching to help people with HD increase their physical activity in a way that fitted in with their own lifestyle.To make sure the programme was as accessible as possible, we developed a programme allowing trained physical activity coaches to interact with people with HD in their own home.
Excitingly, the impact of our research is now being widely acknowledged in the HD field. We coordinated the first ever neural recovery, plasticity and replacement plenary session at the 2016 European Huntington’s Disease Network Plenary meeting and it is becoming apparent that physical activity programmes are now being considered alongside more traditional methods as real treatment options for HD.
Public and patient involvement and engagement is integral to our work.
The HD public and patient community have collaborated in our research for many years to ensure that it is relevant to their needs and concerns. The benefits are seen through, not only the excellent recruitment to our trials, attendance at public events and training days that we have hosted but also for the impact that our family members tell us this has had on their lives.
Our most recent engagement project aimed to translate our research into real life situations by exploring walking as a way of promoting physical activity for people with HD in Wales. The project team collaborated with HD families, Let’s Walk Cymru, and the Huntington’s Disease Association of England and Wales to develop regular walking groups.
We have played an integral role in establishing and contributing to the work of the European Huntington’s Disease Network Physiotherapy working group.
In this time, the working group have published clinical guidance and treatment based classifications for clinicians. These are freely available online and translated into nine European languages to date. They have also developed an online resource to support physical activity in HD families that is hosted on the European Huntington’s Association website and an important part of the HD On the Move Project.
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