Establishing biomarkers and clinical endpoints in myotonic dystrophy type 1 (END-DM1): Protocol of an international natural history study

• Karlien Mul,

  Roles Supervision, Writing – original draft

  Affiliation Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, Nijmegen, The Netherlands

  https://orcid.org/0000-0001-8487-9478

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• Kate Eichinger,

  Roles Conceptualization, Methodology, Writing – review & editing

  Affiliation Department of Neurology, University of Rochester Medical Center, Rochester, New York, United States of America

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• Man Hung,

  Roles Conceptualization, Writing – review & editing

  Affiliation Department of Neurology, Virginia Commonwealth University, Richmond, Virginia, United States of America

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• Valeria A. Sansone,

  Roles Conceptualization, Supervision, Writing – review & editing

  Affiliation Neurorehabilitation Unit, The NeMO Clinical Center, University of Milan, Milan, Italy

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• Cynthia Gagnon,

  Roles Conceptualization, Supervision, Writing – review & editing

  Affiliation Department of Neurology, Université de Sherbrooke, CIUSSS Saguenay–Lac-Saint-Jean, Québec, Canada

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• Sub Subramony,

  Roles Conceptualization, Supervision, Writing – review & editing

  Affiliation Department of Neurology, University of Florida College of Medicine, Gainesville, Florida, United States of America

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• Richard H. Roxburgh,

  Roles Conceptualization, Supervision, Writing – review & editing

  Affiliation Centre for Brain Research Neurogenetics Clinic, The University of Auckland, Auckland, New Zealand

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• Johanna Hamel,

  Roles Conceptualization, Supervision, Writing – review & editing

  Affiliation Department of Neurology, Division of Neuromuscular Disease, and Department of Pathology and Laboratory Medicine, University of Rochester Medical Center, Rochester, New York, United States of America

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• Jeffrey M. Statland,

  Roles Conceptualization, Supervision, Writing – review & editing

  Affiliation Department of Neurology, University of Kansas Medical Center, Kansas City, Kansas, United States of America

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• Bakri Elsheikh,

  Roles Conceptualization, Supervision, Writing – review & editing

  Affiliation Department of Neurology, Division of Neuromuscular Diseases, The Ohio State University Wexner Medical Center, Columbus, Ohio, United States of America

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• Chris Turner,

  Roles Conceptualization, Supervision, Writing – review & editing

  Affiliation Department of Neurology, The Institute of Neurology, University College London and National Hospital for Neurology and Neurosurgery, Queen Square, London, United Kingdom

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• Jacinda Sampson,

  Roles Conceptualization, Supervision, Writing – review & editing

  Affiliation Department of Neurology and Neurological Sciences, Stanford University, Stanford, California, United States of America

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• Thomas Ragole,

  Roles Conceptualization, Supervision, Writing – review & editing

  Affiliation Department of Neurology, University of Colorado Anschutz Medical Campus, Aurora, Colorado, United States of America

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• Emma Matthews,

  Roles Conceptualization, Supervision, Writing – review & editing

  Affiliation Atkinson-Morley Neuromuscular Centre, St George’s University Hospitals NHS Foundation Trust, London, United Kingdom

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• Benedikt Schoser,

  Roles Conceptualization, Supervision, Writing – review & editing

  Affiliation Department of Neurology, Friedrich-Baur-Institute, LMU Clinic, Munich, Germany

  https://orcid.org/0000-0002-2757-8131

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• Andrea Swenson,

  Roles Conceptualization, Supervision, Writing – review & editing

  Affiliation Department of Neurology, University of Iowa, Iowa City, Iowa, United States of America

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• Chamindra Laverty,

  Roles Conceptualization, Supervision, Writing – review & editing

  Affiliation Department of Neurosciences, University of California, San Diego, California, United States of America

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• Perry Shieh,

  Roles Conceptualization, Supervision, Writing – review & editing

  Affiliation Department of Neurology, University of California, Los Angeles, California, United States of America

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• Ericka P. Greene,

  Roles Conceptualization, Investigation, Writing – review & editing

  Affiliation Houston Methodist Neurological Institute, Houston, Texas, United States of America

  https://orcid.org/0000-0003-3053-4057

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• Masanori Takahashi,

  Roles Conceptualization, Supervision, Writing – review & editing

  Affiliation Department of Clinical Laboratory and Biomedical Sciences, Division of Clinical Neurophysiology, Osaka University Graduate School of Medicine, Osaka, Japan

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• Matthew Wicklund,

  Roles Conceptualization, Supervision, Writing – review & editing

  Affiliation Department of Neurology, UT Health San Antonio, San Antonio, Texas, United States of America

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• Jeanne Dekdebrun,

  Roles Conceptualization, Writing – review & editing

  Affiliation Department of Neurology, University of Rochester Medical Center, Rochester, New York, United States of America

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• Jennifer Raymond,

  Roles Conceptualization, Writing – review & editing

  Affiliation Department of Neurology, Virginia Commonwealth University, Richmond, Virginia, United States of America

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• Erin DeSpain,

  Roles Conceptualization, Writing – review & editing

  Affiliation Department of Neurology, Virginia Commonwealth University, Richmond, Virginia, United States of America

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• Charles A. Thornton,

  Roles Conceptualization, Funding acquisition, Supervision, Writing – review & editing

  Affiliation Department of Neurology, Virginia Commonwealth University, Richmond, Virginia, United States of America

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• Nicholas E. Johnson ,

  Roles Conceptualization, Funding acquisition, Supervision, Writing – review & editing

  * E-mail: nicholas.johnson@vcuhealth.org

  Affiliation Department of Neurology, Virginia Commonwealth University, Richmond, Virginia, United States of America

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•  [ ... ],
• Myotonic Dystrophy Clinical Research Network

  ¶Full membership list can found be found in the ‘Acknowledgments’

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