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Section title:
Parkinson's Disease CSG
Introdution:
Introdution:

Chair: Professor David Burn, Newcastle University

Parkinson’s disease (PD) is a neurodegenerative disorder characterised by slowness of movement, a tremor of the limbs at rest and stiffness. It has a prevalence of about one in 750 in the UK. Within DeNDRoN, the PD Clinical Studies Group (CSG) is tasked with overseeing the development of clinical research in this disease area.  The CSG comprises a team with different areas of interest and good geographical coverage, including neurologists, geriatricians, basic scientists, epidemiologists and patient experts. It  has now met three times (twice in London and once in Newcastle) to discuss research into PD and related  motor neurodegenerative disorders such as MSA  and PSP in the UK, and to determine key priorities for further CSG-driven grant submissions in clinical and translational research.  Information relating to the PD CSG and its goals has been transmitted through CSG members to medical charities, the newly formed British Movement Disorders Group (BRIT-MODIS) and key partners in the pharmaceutical industry. 
 
PD research in a national context
  • NICE guidelines for the management of PD, which include research priorities, were published in June 2006. The CSGs research focus embraces some of these and includes: 
  • Further examination of the effects of cholinomimetics on PD dementia and visual hallucinations in PD, as highlighted in the NICE guidelines 
  • Which diagnostic investigations for PD and potential biomarkers of its progression are clinically useful and cost-effective? 
  • Are there ways to improve early accurate diagnosis of PD in a primary care setting? 
  • Which of the currently available therapeutic strategies to deal with refractory motor fluctuations and dyskinesias is most efficacious? 
  • What are the causes for disturbed balance and speech in PD and related disorders, and what treatment programmes can be considered? 
  • What types of PD research are considered important by patients – to be be led by the patient experts on the panel 
 
Study adoption 
 
As of January 2008, the CSG has been involved in adopting five commercial trials and 17 non-commercial studies. One example of a commercially adopted study is an industry-sponsored randomised controlled trial (RCT) of memantine in PD with dementia and the closely-related condition of dementia with Lewy bodies.  The PD CSG has already had an impact in boosting trial recruitment and awareness, and there has been a clear upturn in recruitment to PD Med and PD Gen since the CSG began to operate. 
 
Future plans 
 
One research initiative that has been given a high priority by the group, and by our partner Dementias CSG, is in the area of predictors of outcome and cost-effectiveness of cholinesterase inhibitor treatment in dementia associated with PD.  We also need to build links with primary care  groups in order to work on the early diagnosis of PD in primary care; looking specifically at areas of  misdiagnosis and how to improve diagnostic  accuracy. The role of ancillary investigations (olfactory function, DaTSCAN) to improve diagnostic accuracy will be a specific focus in this area.  The PD CSG includes two expert patients, and we are keen to also involve related organisations such as the PDS to look at outcome measures that are important to the patient and carer. We also need to focus on developing allied health professional related studies. Trials into orphan diseases such as Progressive Supranuclear Palsy and Multiple System Atrophy will also receive high priority. 

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