Non-Motor Parkinson's Disease Study Group

K. Ray Chaudhuri Per Odin Annette Schrag
Chair: K. Ray Chaudhuri Vice Chair: Per Odin Vice Chair: Anette Schrag

 

MDS Staff Liaison: Ken Buesing

Steering Committee

Angelo Antonini
Roongroj Bhidayasiri
Cristian Falup-Pecurariu
Beomseok Jeon
Valentina Leta (Junior Member Representative)
Pablo Martinez-Martin
Per Borghammer
Per Odin
Anette Schrag
Alexander Storch
Lars Timmerman
Mayela Rodriguez Violante
Daniel Weintraub

Standing Members

Charles Adler
Paolo Barone
David J Brooks
Richard Brown
Marc Cantillon
Camille Carroll
Miguel Coelho
Haidar Dafsari
Tove Henriksen
Michele Hu
Peter Jenner
Milica Kramberger
Padma Kumar
Mónica Kurtis
Simon Lewis
Irene Litvan
Kelly Lyons
Davide Martino
Mario Masellis
Hideki Mochizuki 
James F. Morley
Melissa Nirenberg
Javier Pagonabarraga
Jalesh Panicker
Nicola Pavese
Eero Pekkonen
Ron Postuma
Raymond Rosales
Anthony Schapira
Tanya Simuni
Fabrizio Stocchi
Indu Subramanian
Michele Tagliati
Michele Tinazzi
Jon Toledo
Yoshio Tsuboi
Richard Walker

 

Themed Subgroups and respective co-coordinators

Themed Subgroups Coordinators: Daniel van Wamelen, Valentina Leta

Subgroup

Co-coordinators

Mentors

Pain and sensory symptoms

Dr Arturo Abundes-Corona

Dr Katarina Rukavina

Dr Kirsty Bannister

Michele Tinazzi

Miguel Coelho

Sleep dysfunction

Dr Laura Irincu

Dr Siddharth Kharkar

Dr Annette Hand

 

Cristian Falup-Pecurariu

Nicola Pavese

Ronald Postuma

Advanced therapies

Dr Anna Sauerbier

Dr Haidar Dafsari

Dr Sotirios Grigoriou

Haidar Dafsari

Lars Timmerman

Tove Henriksen

Per Odin

Fabrizio Stocchi

Eero Pekkonen

Alexander Storch

Depression, anxiety and psychosis

Dr Chloe Farrell

Dr Yi-Min Wan

Dr Eleonora Fiorenzato

Daniel Weintraub

Anette Schrag

Richard Brown

Paolo Barone

Melissa Nirenberg

Angelo Antonini

Professional occupation and the impact of non-motor symptoms

Dr Jonathan Timpka

Mrs Miriam Parry

Mr Pavlos Zinzalias

Per Odin

Camille Carol

Richard Walker

Complementary therapies

Dr Indu Subramanian

Ms Aleksandra Podlewska

Ms Juliet Staunton

Dr James Morley

Indu Subramanian

Michele Tagliati

Milica Kramberger

Mayela Rodriguez-Violante

Pharmacology and basic neuroscience

Dr Kanako Kurihara

Dr Nobutaka Takahashi

Dr Mahmoud Iravani

Peter Jenner

Kelly Lyons

Mario Masellis

Hideki Mochizuki

Artificial intelligence and wearables

Dr Jirada Sringean

Dr Dhaval Trivedi

Dr Daniel van Wamelen

Dr Giovanni Gentile

Roongroj Bhidayasiri

Monica Kurtis Urra

Michele Hu

Raymond Rosales

Camille Carroll

Angelo Antonini

Biomarkers for non-motor symptoms

Dr Shyamal Mehta

Dr Daniele Urso

Dr David Coughlin

Dr Jon Toledo

Dr Stefanie Jost

David J Brooks

Ronald Postuma

Irene Litvan

Charles Adler

Michele Hu

Beomseok Jeon

Autonomic and gastrointestinal dysfunction

Dr Veronica Bruno

Dr Valentina Leta

Dr Hafize Cotur

Dr Katherine Longardner

Dr Lisa Klingelhoefer

Dr Marta Campagnolo

Fabrizio Stocchi

Per Borghammer

Yoshio Tsuboi

Jalesh Panicker

Cognition and apathy

Dr Rimona Weil

Dr Lucia Batzu

Dr Claudia Ocampo

Dr Priya Jagota

Dr Ece Bayram

Dr Roberta Biundo

Daniel Weintraub

Anette Schrag

Simon Lewis

Paolo Barone

Tanya Simuni

Angelo Antonini

Statistical cross-cutting subgroup

 

Dr Carmen Rodriguez-Blazquez

Dr João Forjaz

Pablo Martinez-Martin

Daniel Weintraub

Anette Schrag

Managerial and Coordination

Alexandra Rizos
Daniel Van Wamelen
Valentina Leta

MDS Non-Motor PD Study Group members pose for a photo in San Diego, CA, in June 2015.

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.netdaniel.van_wamelen@kcl.ac.uk and valentina.leta@nhs.net.

Content to come 

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