Non-Motor Parkinson's Disease Study Group

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Chair: Cristian Falup-Pecurariu	Co-Chair: Per Odin	Co-Chair: Anette Schrag	Past Chair: K. Ray Chaudhuri

MDS Staff Liaison: Allie Oakley

Goals

1. To collect new and novel patient and carer reported information on Non-Motor Symptoms (NMS) of Parkinson’s disease from around the world
2. To develop a MDS version of a new PD non motor symptoms scale
3. To ensure that comprehensive and unified NMS assessments in clinical trials and scientific studies are increasingly used to increase the “real life” value of clinical trials and clinical studies
4. To develop new and novel NMS instruments for use in clinics:

• PD pain scale (currently in development and validation)
• Vision scale
• Sexual dysfunction scale
• Urinary symptoms scale
   

5. To set up and start international cross cultural studies, to improve existing tools for NMS (e.g. NMSS and NMSQ)
6. To develop animal models addressing non-motor phenotypes of PD
7. To refine, validate and establish non-motor subtypes of PD and related biomarkers

Ongoing Projects

A. The NM-PD study group will aim to complete and publish 3 key studies adopted from the work of the international Parkinson's Disease Non-Motor Group (PDNMG). These are:

• The EuroInf study: Multicentre, European study comparing key motor, non-motor and quality of life effects of advanced conventional therapies apomorphine infusion, intrajejunal levodopa infusion and subthalamic nucleus deep brain stimulation in PD. Data presented at the MDS congress in Sydney, June 2013.
• The DAICE-ET study: Multicentre European study of real life comparison of immediate release, long-acting and transdermal dopamine agonists and tolerability in elderly patients with a focus on impulse control disorders. Data presented at the MDS Congress in Sydney, June 2013.
• EURO-DAWS study: Multi-centre European prospective survey of range, nature and frequency of dopamine agonist withdrawal syndrome in Parkinson’s disease.
• The definition, characterization and frequency of non-motor sub-types of PD and possible biomarkers exploration.
  The development, and clinical validation of the MDS PD non-motor symptoms scale.

B: Current work packages include:

• WP 1: Non-motor subtypes and biomarkers
• WP 2: Development of the MDS- NMS scale
• WP 3: Animal models
• WP 4: DBS and non-motor effects in PD
• WP 5: Studies addressing fatigue and sleepiness in PD

C: Membership information, information on participating in ongoing studies/projects, meetings of NM-PD could be obtained by e-mailing the managers: a.rizos@nhs.net, daniel.van_wamelen@kcl.ac.uk and valentina.leta@nhs.net.