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International Parkinson and Movement Disorder Society

 

Multiple System Atrophy Study Group

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Have questions? Contact the group's MDS Staff Liaison, Amber Flatland, at aflatland@movementdisorders.org

Goals

We plan to develop a common data-set, including disease-specific validated rating scales for harmonized data acquisition. Second, we intend to launch a global MSA patient registry. Third, we will launch studies focusing on the discovery of diagnostic and surrogate (bio)markers, and determination of environmental and genetic underpinnings. Finally, we will develop consensus (best-practice) guidelines for the standard of care in MSA (based on the principles of evidence-based medicine).

We defined the following specific aims:

  1. To establish a global patient registry
  2. To set up a decentralized biomaterial bank and thereby define standard operating procedures to harmonize blood, CSF and brain tissue sampling.
  3. To identify MSA genetic risk loci using large-scale genome-wide association studies
  4. To develop, translate and validate additional MSA-specific rating scales
  5. To define and validate autonomic progression markers
  6. To define and validate MRI and functional imaging surrogate progression markers
  7. To develop interventional trial guidelines
  8. To develop best-practice (evidence-based) guidelines for pharmacologic as well as non-pharmacologic treatments.
  9. To investigate MSA pathophysiological mechanisms and screen candidate compounds in preclinical MSA models
Need For Study Group in the Field  

Multiple system atrophy (MSA) is a rare and relentlessly progressive movement disorder with an estimated prevalence of 4/100,000 people (Schrag 1999). There is currently no treatment available to significantly alleviate motor and autonomic symptoms or to modify the natural course of the disease. In addition, there are no widely accepted guidelines on symptomatic treatment strategies available.

To date, clinical MSA research has been limited by the low prevalence rate preventing individual research sites from studying sufficient patient numbers. Thus, a coordinated effort at an international level is required to advance MSA research in the field of biomarker discovery, early diagnosis, definition of genetic underpinnings and translational drug development. Consequently, an administrative framework for global collaborative MSA research is needed.

View the group's: 

 

Leadership


Chair
Wolfgang Singer 


Co-Chair
Maria Teresa Pellecchia 

Steering Committee

Erwan Bezard
Katherine Marie Longardner
Alessandra Fanciulli
Viorica Chelban
Nikolaus McFarland
Manu Sharma
Vikram Khurana
Florin Gandor
Alexander Pantelyat
Tanya Gurevich 

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Published Papers

Published paper

Genome Sequence Analyses Identify Novel Risk Loci for Multiple System Atrophy

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Resource Type
  • Published paper
Authoring group
  • Multiple System Atrophy

Published paper

Patient-Reported Symptoms in the Global Multiple System Atrophy Registry

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Resource Type
  • Published paper
Authoring group
  • Multiple System Atrophy

Published paper

The Movement Disorder Society Criteria for the Diagnosis of Multiple System Atrophy

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Resource Type
  • Published paper
Authoring group
  • Multiple System Atrophy
  • Progressive Supranuclear Palsy (PSP)

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