Peer-Reviewed Publication
Mov Disord Clin Pract2026October 5, 2026Journal Article
Defining the Clinical Phenotypic Ground Truth: Expert Interrater Agreement in Hyperkinetic Movement Disorders.
Madelein van der Stouwe1,2,3, Olof Vermeulen1,2, Wieke Eggink1,2, Tove Henriksen4, Eavan McGovern5,6, Marenka Smit7, Selma Aybek8,9, Agnita Boon10, Rick Brandsma11, Andres Deik12, Roberto Erro13, Alberto Espay14, Cristian Falup-Pecurariu15,16, Stephen Frucht17, Christos Ganos18,19, Emilia Gatto20,21, Rick Helmich22,23, Christine Klein24, Hans Koelman25, Vincent Odekerken25, Lisette Koens26, Abhimanyu Mahajan14, Francesca Morgante27, Alexander Münchau28, Pattamon Panyakaew29, Kathryn Peall30,31, Bélen Pérez-Dueñas32,33, Emanuel Roze34, Anna Sadnicka35,36,37, Susanne Schneider38, Petra Schwingenschuh39, Tereza Serranova40, Matej Skorvanek41,42, Maria Stamelou43, Gertrúd Tamas44, Michele Tinazzi45, Anna Valadas46,47, Wim Vandenberghe48,49, Jeroen de Vries1,2, Rodi Zutt50, Sterre van der Veen1,2, Rogier Luiken51, Inge Tuitert1,2, Marina Tijssen1,2
1Expertise Center Movement Disorders Groningen, University Medical Center Groningen, Groningen, the Netherlands.
2Department of Neurology, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands.
3Department of Neurology, Ommelander Ziekenhuis Groningen, Scheemda, the Netherlands.
4Movement Disorder Clinic, University Hospital of Bispebjerg, Copenhagen, Denmark.
5Department of Neurology, Beaumont Hospital, Dublin, Ireland.
6School of Medicine, Royal College of Surgeons in Ireland, Dublin, Ireland.
7Department of Neurology, Medical Clinic Velsen, Velsen-Noord, the Netherlands.
8Department of Neurology, Faculty of Science and Medicine, University of Fribourg, Fribourg, Switzerland.
9Psychosomatic Medicine Unit, Department of Neurology, Inselspital Bern University Hospital, University of Bern, Bern, Switzerland.
10Department of Neurology, Erasmus MC Rotterdam, Rotterdam, the Netherlands.
11Department of Pediatric Neurology, University Medical Center Utrecht, Utrecht, the Netherlands.
12Parkinson's Disease and Movement Disorders Center, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
13Department of Medicine, Surgery and Dentistry "Scuola Medica Salernitana," University of Salerno, Fisciano, Italy.
14James J. and Joan A. Gardner Family Center For Parkinson's Disease and Movement Disorders, University of Cincinnati, Cincinnati, Ohio, USA.
15Faculty of Medicine, Transilvania University, Brasov, Romania.
16Department of Neurology, County Clinic Hospital, Brasov, Romania.
17NYU Grossman School of Medicine, New York, New York, USA.
18Division of Neurology, Department of Medicine, Movement Disorders Clinic, Toronto Western Hospital, UHN, University of Toronto, Toronto, Ontario, Canada.
19Krembil Brain Institute, Toronto, Ontario, Canada.
20Department of Clinical Medicine, Sanatorio de la Trinidad Mitre, Affiliated to the Faculty of Medicine of the University of Buenos Aires, Buenos Aires, Argentina.
21Parkinson's and Movement Disorders Section of the Institute of Neurosciences Buenos Aires, Buenors Aires, Argentina.
22Centre for Cognitive Neuroimaging, Donders Institute for Brain, Cognition and Behaviour, Radboud University Nijmegen, Nijmegen, the Netherlands.
23Department of Neurology, Center of Expertise for Parkinson and Movement Disorders, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Centre, Nijmegen, the Netherlands.
24Institute of Neurogenetics, University of Lübeck, Lübeck, Germany.
25Department of Neurology, Amsterdam University Medical Centers, University of Amsterdam, Amsterdam, the Netherlands.
26Department of Neurology and Clinical Neurophysiology, Martini Ziekenhuis, Groningen, the Netherlands.
27Neurosciences and Cell Biology Institute, Neuromodulation and Motor Control Section, City St George's University of London, London, UK.
28Institute of Systems Motor Science, CBBM, University of Lübeck, Lübeck, Germany.
29Chulalongkorn Centre of Excellence for Parkinson's Disease and Related Disorders, Division of Neurology, Department of Medicine, Faculty of Medicine, King Chulalongkorn Memorial Hospital and Chulalongkorn University, Thai Red Cross Society, Bangkok, Thailand.
30Laboratories of Neuroscience Research, Division of Psychological Medicine and Clinical Neurosciences, Cardiff University, Cardiff, UK.
31Neuroscience and Mental Health Innovation Institute, Cardiff University, Cardiff, UK.
32Innovative Therapies in Pediatric Neurology Research Group, Vall d'Hebron Research Institute, Barcelona, Spain.
33Department of Pediatrics, Universitat Autònoma de Barcelona, Barcelona, Spain.
34Sorbonne University, INSERM, CNRS, Paris Brain Institute, AP-HP, Institute of Neurology, Paris, France.
35Gatsby Computational Neuroscience Unit, University College London, London, UK.
36Department of Clinical and Movement Neurosciences, University College London, London, UK.
37National Hospital for Neurology and Neurosurgery, London, UK.
38INSPIRE-PNRM+, Neuroimaging Center (NIC), University Medical Center of the Johannes Gutenberg University Mainz, Mainz, Germany.
39Department of Neurology, Medical University of Graz, Graz, Austria.
40Department of Neurology, 1st Faculty of Medicine and General University Hospital in Prague, Charles University, Prague, Czech Republic.
41Department of Neurology, P.J. Safarik University, Kosice, Slovak Republic.
42Department of Neurology, University Hospital of L. Pasteur, Kosice, Slovak Republic.
43Parkinson's Disease and Movement Disorders Department, HYGEIA, Athens, Greece.
44Department of Neurology, Semmelweis University, Budapest, Hungary.
45Biomedicine and Movement Sciences, Neurology Unit, Department of Neurosciences, University of Verona, Verona, Italy.
46Department of Neurosciences and Mental Health, Neurology Hospital Santa Maria, CHLUN, Lisbon, Portugal.
47Faculty of Medicine, Instituto de Medicina Molecular João Lobo Antunes, University of Lisbon, Lisbon, Portugal.
48Department of Neurology, University Hospitals Leuven, Leuven, Belgium.
49Department of Neurosciences, KU Leuven, Leuven, Belgium.
50Department of Neurology, HagaZiekenhuis, The Hague, the Netherlands.
51Department of Rehabilitation Medicine, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands.
Abstract
BACKGROUND: Reliable clinical phenotyping is crucial for diagnosis, treatment, and research in hyperkinetic movement disorders, yet its interrater reliability remains uncertain.
OBJECTIVES: To quantify interrater agreement in clinical phenotyping of hyperkinetic movement disorders among experts in a large, phenotypically diverse cohort.
METHODS: Within the NEMO project, 161 patients with hyperki…
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