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Multiple System Atrophy Study Group

Gregor K. Wenning Wassilios Meissner
Chair: Gregor K. Wenning Vice-Chair: Wassilios Meissner


MDS Staff Liaison: Ken Buesing

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  Members

Europe

  • Austria: Kurt Jellinger, Florian Krismer, Werner Poewe, Klaus Seppi, Gregor Wenning
  • Belgium: Gaetan Garraux
  • Bulgaria: Latchezar Traykov
  • Czech Republic: Evzen Ruzicka
  • Denmark: Poul Henning Jensen, Karen Østergaard, Kristian Winge
  • France: Erwan Bezard, Pierre-Olivier Fernagut, Anne Pavy-LeTraon, Wassilios Meissner, Ronald Melki, Francois Tison, Olivier Rascol
  • Germany: Günther Deuschl, Thomas Gasser, Thomas Klockgether, Wolfgang Oertel, Heinz Reichmann, Manu Sharma
  • Greece: Maria Stamelou, Maria Xilouri
  • Ireland: Tim Lynch, John McKinley
  • Israel: Ruth Djaldetti, Tanya Gurevich
  • Italy: Alberto Albanese, Paolo Barone, Carlo Colosimo, Pietro Cortelli, Alessio Di Fonzo, Giuseppe Meco, Annamaria Vallelunga
  • Netherlands: Bart Post, Bastiaan R. Bloem
  • Portugal: Joaquim Ferreira
  • Romania: Elena Cecilia Rosca
  • Serbia: Vladimir S. Kostić
  • Spain: Eduardo Tolosa, Jose Berciano
  • Sweden: Håkan Widner
  • United Kingdom: Huw Morris, Henry Houlden, Kailash P. Bhatia, Christopher J. Mathias, Niall Quinn
     

North America/South America

  • Argentina: Emilia M. Gatto
  • Chile: Pedro Chaná
  • Mexico: Mayela Rodriguez Violante
  • Peru: Carlos Cosentino
  • United States: James Bower, Roy Freeman, David S. Goldstein, Robert A. Hauser, Joseph Jankovic, Horacio Kaufmann, Jeffrey H. Kordower, Irene Litvan, Phillip A. Low, Eliezer Masliah, Laurie Ozelius, Susan Perlman, David Robertson, Miriam Sklerov, John Trojanowski, Steven Vernino
     

Asia and Oceania

  • Australia: David Finkelstein
  • China: Weihong Gu
  • Japan: Shoji Tsuji, Tetsutaro Ozawa, Atsushi Takeda, Hidenao Sasaki, Masaaki Matushima, Masashi Aoki, Osamu Onodera, Masatoyo Nishizawa, Hidehiro Mizusawa, Kinya Ishikawa, Satoshi Kuwabara, Kimihito Arai, Kazuko Hasegawa, Tatsuhiko Yuasa, Hirohisa Watanabe, Mizuki Ito, Gen Sobue, Fumiaki Tanaka, Kenichi Yasui, Kenji Nakashima, Yuishin Izumi, Takeo Kato, Susumu Kusunoki, Kazumasa Saigoh, Hiroshi Takashima, Hjiri Ito, Jun Mitsui
  • South Korea: Han-Joon Kim
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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