About the Authors

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

Kate Eichinger

Roles Conceptualization, Methodology, Writing – review & editing

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

Man Hung

Roles Conceptualization, Writing – review & editing

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

Valeria A. Sansone

Roles Conceptualization, Supervision, Writing – review & editing

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

Cynthia Gagnon

Roles Conceptualization, Supervision, Writing – review & editing

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

Sub Subramony

Roles Conceptualization, Supervision, Writing – review & editing

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

Richard H. Roxburgh

Roles Conceptualization, Supervision, Writing – review & editing

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

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

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

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

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

Jacinda Sampson

Roles Conceptualization, Supervision, Writing – review & editing

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

Thomas Ragole

Roles Conceptualization, Supervision, Writing – review & editing

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

Emma Matthews

Roles Conceptualization, Supervision, Writing – review & editing

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

Benedikt Schoser

Roles Conceptualization, Supervision, Writing – review & editing

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

Andrea Swenson

Roles Conceptualization, Supervision, Writing – review & editing

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

Chamindra Laverty

Roles Conceptualization, Supervision, Writing – review & editing

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

Perry Shieh

Roles Conceptualization, Supervision, Writing – review & editing

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

Ericka P. Greene

Roles Conceptualization, Investigation, Writing – review & editing

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

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

Matthew Wicklund

Roles Conceptualization, Supervision, Writing – review & editing

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

Jeanne Dekdebrun

Roles Conceptualization, Writing – review & editing

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

Jennifer Raymond

Roles Conceptualization, Writing – review & editing

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

Erin DeSpain

Roles Conceptualization, Writing – review & editing

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

Charles A. Thornton

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

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

Nicholas E. Johnson

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

nicholas.johnson@vcuhealth.org

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

Myotonic Dystrophy Clinical Research Network

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

Competing Interests

I have read the journal’s policy and the authors of this manuscript have the following competing interests: KM served as a paid consultant for Dyne Therapeutics and Avidity Biosciences. She received research funds from PepGen Inc. KE has received personal compensation for serving on advisory boards and/or as a consultant for Fulcrum Therapeutics, Avidity Biosciences, Roche, and Dyne Therapeutics and TRiNDS. VS serves on Advisory Boards and provides intellectual and scientific activities for Dyne, Avidity, Roche, Biogen, Novartis, Pepgen, Verthex, Arthex, Italfarmaco. CG has consulting agreements with Dyne Therapeutics and Vertex Therapeutics. SS has received prior funding from the NIH, FDA, Friedreich Ataxia Research Alliance, National Ataxia Foundation, Avidity, Vertex, Arthrex, PTC, Reata, Biogen, Retrotope, RENEO, Biohaven, and Fulcrum Therapeutics. SS participates on the board for Reata, Avidity, Biogen, Amicus, Fulcrum, and Lupin. RR has received funding for advisory boards for Roche, Biogen and Larimar, for clinical trials from Dyne, Arrowhead, Edgewise, Reneo, Stealth, Amicus, Roche and for investigator-led research from Biogen and Roche. JH serves on the clinical advisory board for Vertex Therapeutics and Dyne Therapeutics. JMS has received grant funding from the NIH, CDC, MDA, FSHD Society, Friends of FSH Research, and FSHD Canada; and has served on the scientific advisory board or as a consultant for Dyne Therapeutics, Avidity, Fulcrum, Roche, Epic Bio, Armatus, Kate, Alnylam, and MiRecule. BE served as paid consultant for Biogen and Genentech. He received research funds from Biogen, Genentech, NMD Pharma, RaPharma, Alexion, UCB, Pharnext, Avidity, and Celgene. CT has a consulting agreement with Vertex Pharmaceuticals. TR has served as a paid consultant for Alexion, AstraZeneca Rare Disease, and UCB. He has received grant funding from Alexion, AstraZeneca Rare Disease, and argenx SE. BS has served as a paid consultant for Amicus, argenx, Astellas, Avidity, Pepgen, and Sanofi and received speaker honoraria from Amicus, Alexion, Kedrion, and Sanofi. He declares no stocks or shares. CGL has received consulting fees from Novartis, Biogen, Sarepta, Avidity, Dyne, NS Pharma, Takeda, PTC, Solid, and UCB. She is the PI for Sarepta, Avidity, Scholar Rock, Dyne, Biohaven, and Edgewise. MPT has served as a paid consultant for Alexion Pharmaceuticals, argenx, Dyne Therapeutics, Japan Clinical Research Operations, Nippon Shinyaku, and Ono Pharmaceutical, and received speaker honoraria from argenx, Alexion Pharmaceuticals, and UCB Pharma. JD has sered as a paid consultant for Avidity, Dyne, Vertex, Sanofi, PepGen, Arthex, and Lupin. CAT has received royalties and licensing from JAX Laboratories; he has received consulting fees from Sanofi, Biogen, Kate Therapeutics, and Entrada; he has received honoraria from Vertex, Sanofi, and Alnylam, he has participated in an advisory board for Dyne Therapeutics and Pepgen; he serves on board of directors for Myotonic Dystrophy Foundation. NEJ receives royalties from the CCMDHI and the CMTHI. He receives research funds from Novartis, Takeda, PepGen, Sanofi Genzyme, Dyne, Vertex Pharmaceuticals, Fulcrum Therapeutics, AskBio, ML Bio, and Sarepta. He has provided consultation for Arthex, Angle Therapeutics, Juvena, Rgenta, PepGen, AMO Pharma, Takeda, Design, Dyne, AskBio, Avidity, and Vertex Pharmaceuticals. He has equity in Angle Therapeutics, and MyoGene Therapeutics. The other authors have nothing to declare. This does not alter our adherence to PLOS ONE policies on sharing data and materials.