International Parkinson and Movement Disorder Society (MDS) Endorsed Parkinson’s Disease Non-Motor Study Group
The Parkinson’s Disease Non-Motor Study Group have been featured in the latest issue of Moving Along – a quarterly newsletter that offers the Society’s members up-to-date information on new developments in the field of Movement Disorders, upcoming activities, and MDS news and announcements. An extract – along with details on accessing the newsletter in full – can be found below:
“Non-motor symptoms (NMS) of Parkinson’s disease (PD) affect virtually every patient, and are the major cause for poor quality of life for both people with Parkinson’s (PwP) and their caregivers. In spite, NMS are under-reported as often healthcare workers nor patients recognize them as symptoms of PD and treatment remains poor and quality of life progressively deteriorates. As a consequence, the burden of NMS represents one of the biggest challenges faced by health care professionals working with the PD community. This is also partly because focused research to understand the cause and progression of common NMS is scarce.
Funding for non-motor issues as a whole in PD seldom receive priority compared to for instance, investigations of genetic causes of PD and the search for a cure. While several strands of research has focused on individual NMS, such as cognition and depression and others on pre-motor aspects of PD, there is little research that has made the issue of NMS burden as a priority although this is what is reflected in what patients tell us and is the key issue in “real life”. The MDS endorsed Parkinson’s Disease Non-Motor Study Group (PD-NMSG) was formed in 2013 and aims to focus its research on NMS as a whole rather than a “piecemeal” approach and address some key unmet needs. The group, led by K. Ray Chaudhuri, has a significant track record in the field having developed MDS adopted tools such as the NMS Questionnaire, the Parkinson’s Disease Sleep Scale, the NMS Scale, and key publications related to the impact of NMS burden on quality of life in PD as well as pathophysiology of poorly understood NMS such as fatigue, sleepiness and pain.”