Prof Jon Marsden gave a brief update on happenings with the Physical Activity in Rare Conditions Collaboration (PARCC) study.
Readers can read my blog post on the initial meeting back in Janurary 2017 here: http://hspjourney.blogspot.co.uk/2017/02/physical-activity-in-rare-conditions.html. Jon said that the group comprised Huntingtons Disease (HD), Spinocerebellar Ataxia (SCA), Muscular Dystrophy (MD). Progressive Supranuclear Palsy (PSP) and, of course, HSP.
The researchers leading the work are experts within these conditions and associated symptom relief (e.g. physiotherapy). There are many similarities in the the symptoms of these conditions, and the approach is to develop an approach which works on these symptoms.
They are aiming to use the various support groups to map the different practices, working out what is done and how it is done. They are investigating potential physical activity rehabilitation options to deliver outcomes, working out how they will measure those outcomes, and working out how they would implement those options.
Jon referred to Rachel Chapmans falls study, wondering if they could look at walking style to reduce the risk of falls. It might be possible within the PARCC remit, or it may be for a different study.
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