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International Parkinson and Movement Disorder Society
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Multiple System Atrophy Study Group

Chair: Wolfgang Singer Co-Chair: Maria Teresa Pellecchia


MDS Staff Liaison: Amber Flatland

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  Members

Europe

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, 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: 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 

 

North America/South America

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

 

Asia and Oceania

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 

South Korea: Han-Joon Kim, Chong S. Lee 

 

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)

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