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International Parkinson and Movement Disorder Society
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Multiple System Atrophy Study Group

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Chair: Wolfgang Singer Co-Chair: Maria Teresa Pellecchia


MDS Staff Liaison: Amber Flatland

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  Members

Asian and Oceanian Section 

Australia: David Finkelstein, Victor Fung, Glenda Halliday, Thomas Kimber, John O'Sullivan  

People’s Republic of China: Weihong Gu  

India: Sujith Ovallath  

Japan: Tetsutaro Ozawa, Takayoshi Shimohata, Atsushi Takeda, Shoji Tsuji, Hirohisa Watanabe  

Korea: Han-Joon Kim, Chong S. Lee  

European Section 

Austria: Sylvia Boesch, Atbin Djamshidian, Susanne Duerr, Alessandra Fanciulli, Birgit Frauscher, Birgit Hogl, Kurt Jellinger, Christine Kaindlstorfer, Florian Krismer, Philipp Mahlknecht, Christoph Müller, Werner Poewe, Christoph Scherfler, Klaus Seppi, Nadia Stefanova, Gregor Wenning  

Belgium: Gaëtan Garraux  

Bulgaria: Mariya Ivanova Petrova, Latchezar Traykov  

Czech Republic: Hana Brozova, Jiri Klempir, Evzen Ruzicka  

Denmark: Poul Henning Jensen, Erik Johnsen, Karen Ostergaard, Kristian Winge  

France: Erwan Bezard, Pierre-Olivier Fernagut, Wassilios Meissner, Ronald Melki, Olivier Rascol, Francois Tison, Anne Pavy-Le Traon  

Germany: Günther Deuschl, Richard Dodel, Karla Eggert, Florin Gandor, Thomas Gasser, Guenter Hoeglinger, Jan Kassubek, Thomas Klockgether, Johannes Levin, Wolfgang Oertel, Heinz Reichmann, Gesine Respondek, Claudia Schulte, Manu Sharma, Thilo Van Eimeren,  Ullrich Wuellner  

Greece: Maria Stamelou, Maria Xilouri  

Ireland: Tim Lynch  

Israel: Ruth Djaldetti, Nir Giladi, Tanya Gurevich  

Italy: Alberto Albanese, Angelo Antonini, Paolo Barone, Alfredo Berardelli, Ubaldo Bonuccelli, Giovanna Calandra-Buonaura, Margherita Canesi, Roberto Ceravolo, Carlo Colosimo, Pietro Cortelli, Alessio Di Fonzo, Eleonora Fiorenzato, Giuseppe Meco, Anna Marie Vallelunga  

Netherlands: Bastiaan R. Bloem, Carlijn Borm, Bart Post, Bart PC. van de Warrenburg  

Poland: Jaroslaw Slawek  

Portugal: Miguel Coelho, Joaquim J. Ferreira  

Romania: Cristian Falup-Pecurariu, Elena Cecilia Rosca  

Serbia: Vladimir S. Kostic, Igor Petrovic, Iva Stankovic  

Slovenia: Zvezdan Pirtosek  

Spain: Jon Infante, Laura Munoz Delgado, Alexandra Perez Soriano, Eduardo Tolosa  

Sweden: Deniz Kirik, Hakan Widner  

United Kingdom: Amit Batla, Kailash Bhatia, David J. Brooks, Richard G. Brown, David Burn, Clare J. Fowler, Alex Gerhard, Boyd Ghosh, Marios Hadjivassiliou,  Janice Holton, Henry Houlden, Andrew Lees, Helen Ling, Luke Massey, Christopher J. Mathias, John McKinley, Huw Morris, Niall Quinn, Tamas Revesz, Anna Sailer, Cristina Sampaio,  Lucia Schottlaender, Anette Schrag  

Pan American Section 

Argentina: Alejandro Alleva, Jose Luis Etcheverry, Emilia Gatto, Ana Sanguinetti   

Canada: Anthony Lang, Michael Schlossmacher  

Chile: Pedro Chana-Cuevas  

Mexico: Mayela Rodriguez-Violante  

Peru: Carlos Cosentino  

USA: Italo Biaggioni, Gal Bitan, James Bower, Dennis Dickson, Roy Freeman, Wendy Galpern, David Goldstein, Robert Hauser, Un Jung Kang, Horacio Kaufmann, Lucy Kaufmann, Lawrence Kellerman, Julia Kennedy, Vikram Khurana, Shunsuke Koga, Jeff Kordower, Irene Litvan, Katie Longardner, Phillip Low, Eliezer Masliah, Nikolaus McFarland, Patricio Millar Vernetti, Laurie Ozelius, Jose Alberto Palma Carazo, Alexander Pantelyat, Susan Perlman, David Robertson, Jeremy Schmahmann, Sonja Scholz, Wolfgang Singer, Miriam Sklerov, John Trojanowski, David Vaillancourt, Steven Vernino, Ryan Walsh, Daniel Weintraub 

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).

To this end, 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.

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Published Papers

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)

Published paper

Reduced oligodendrocyte exosome secretion in multiple system atrophy involves SNARE dysfunction

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Resource Type
  • Published paper
Authoring group
  • Multiple System Atrophy

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