Junker, Johanna
Hall, James
Berman, Brian D.
Vidailhet, Marie
Roze, Emmanuel
Bäumer, Tobias
Malaty, Irene A.
Shukla, Aparna Wagle
Jankovic, Joseph
Reich, Stephen G.
Espay, Alberto J.
Duque, Kevin R.
Patel, Neepa
Perlmutter, Joel S.
Jinnah, H. A.
Brandt, Valerie
Brüggemann, Norbert http://orcid.org/0000-0001-5969-6899
,
Funding for this research was provided by:
National Center for Advancing Translational Sciences (NCATS, U54 TR001456)
National Institute of Neurological Disorders and Stroke (NINDS, U54 NS065701, U54 NS116025)
Universität zu Lübeck
Article History
Received: 13 August 2023
Revised: 19 September 2023
Accepted: 21 September 2023
First Online: 15 October 2023
Declarations
:
: Johanna Junker is supported by the Michael J. Fox Foundation and received a Family Mobility Grant from the University of Luebeck. James Hall has received grant support from: Oxford University Press; The Australian Research Council; The Centre for British Teachers Education Trust; & The UK Government (Department for Education; UK Research and Innovation). Has received travel compensation and/or honoraria from: Oxford Risk; Oxfordshire Educational Psychology Service; The Moscow School of Social and Economic Sciences; The University of Macau; Westminster Education Forum. He is an advisor to the UK Government Department Ofsted via membership of their Early Education Curriculum Forum. Brian D. Berman has received research grant support from the Dystonia Coalition (receives the majority of its support through NIH grant NS065701 from the Office of Rare Diseases Research in the National Center for Advancing Translational Science and National Institute of Neurological Disorders and Stroke), the Parkinson’s Foundation, the VCU School of Medicine, the Administration for Community Living, and the Dystonia Medical Research Foundation. He has received honoraria from the International Parkinson and Movement Disorder Society and serves on the Medical and Scientific Advisory Council of the Dystonia Medical Research Foundation as well as the Medical Advisory Board of the Benign Essential Blepharospasm Research Foundation and the National Spasmodic Torticollis Association. Marie Vidailhet: The author declares that she has no conflict of interest. Emmanuel Roze received honorarium for speech from Orkyn, Aguettant, Elivie and for participating in advisory boards from Merz-Pharma, Ipsen, Teva, and BIAL. He received research support from Merz-Pharma, Orkyn, Aguettant, Elivie, Ipsen, Everpharma, Enjoysharing, Fondation Desmarest, AMADYS, ADCY5.org, Fonds de dotation Patrick Brou de Laurière, Agence Nationale de la Recherche, Dystonia Medical Research Foundation. Tobias Bäumer has received funding from the German Research Foundation (DFG, BA 6375/2–1). He received speaker and consultant fees from Pelzerhaken Children's Centre, Allergan/Abbvie, Ipsen Pharma and Merz Pharmaceuticals. He has received research funding from: Allergan/Abbvie, Ipsen Pharma and Merz Therapeutical. He was supported with exhibition ultrasound equipment on loan from Cannon and ESAOTE. Irene A. Malaty has participated in research funded by the Parkinson Foundation, Tourette Association, Dystonia Coalition, AbbVie, Emalex, Neuroderm, Revance, and Sage but has no owner interest in any pharmaceutical company. She has received consulting fees from Abbvie. She has received travel compensation or honoraria from the Tourette Association of America, Parkinson Foundation and Cleveland Clinic, and royalties from Robert Rose publishers. Aparna Wagle Shukla reports grant support from the NIH R01NS122943 as PI and Ro1 NS121120-01 as a Co-I. She reports past funding from Benign Essential Blepharospasm Research foundation, Dystonia coalition, Dystonia Medical Research foundation, National Organization for Rare Disorders. AWS has received consultant fees from Merz, Jazz and Acadia. She is the current Vice President for the Tremor Research Group and recent advisor for Supernus and Biogen-Sage. Joseph Jankovic has received research/training funding from: AbbVie Inc; Acadia Pharmaceuticals; Allergan, Inc; Biotek; Cerevel Therapeutics; CHDI Foundation; Dystonia Coalition; Emalex Biosciences, Inc; F. Hoffmann-La Roche Ltd; Huntington Study Group; Medtronic Neuromodulation; Merz Pharmaceuticals; Michael J Fox Foundation for Parkinson Research; National Institutes of Health; Neuraly, Inc.; Neurocrine Biosciences; Parkinson’s Foundation; Parkinson Study Group; Prilenia Therapeutics; Revance Therapeutics, Inc; Teva Pharmaceutical Industries Ltd. Stephen G. Reich: NINDS: Data Safety Monitoring Committee; Book Royalties: Springer, Informa, Oxford; Consultant: Best Doctors; Reviewer: UpToDate. Alberto J. Espay has received grant support from the NIH and the Michael J Fox Foundation; personal compensation as a consultant/scientific advisory board member for Neuroderm, Amneal, Acadia, Avion Pharmaceuticals, Acorda, Kyowa Kirin, Sunovion, Supernus (formerly, USWorldMeds), and Herantis Pharma; personal honoraria for speakership for Avion, Amneal, and Supernus; and publishing royalties from Lippincott Williams & Wilkins, Cambridge University Press, and Springer. He cofounded REGAIN Therapeutics and is co-inventor of the patent “Compositions and methods for treatment and/or prophylaxis of proteinopathies.” Kevin R. Duque has received honoraria from Parkinson's Foundation for translation support. Neepa Patel has received honoraria as a consultant for Abbott Laboratories, Abbvie Pharmaceuticals and a speaker for Boston Scientific. Joel S. Perlmutter has received research funding from National Institutes of Health (NCATS, NINDS, NIA), Michael J Fox Foundation, Barnes-Jewish Hospital Foundation (Elliot Stein Family Fund and Parkinson disease research fund), American Parkinson Disease Association (APDA) Advanced Research Center at Washington University, Greater St. Louis Chapter of the APDA, Paula and Rodger Riney Fund, Jo Oertli Fund, the Murphy Fund, Huntington Disease Society of America, and CHDI. He has received honoraria from CHDI, Huntington Disease Study Group, Parkinson Study Group, Beth Israel Hospital (Harvard group), U Pennsylvania, Stanford U, St. Lukes Hospital, Boston University. He also is co-director for the Dystonia Coalition, which has received the majority of its support through the NIH (grants NS116025, NS065701 from the National Institutes of Neurological Disorders and Stroke TR 001456 from the Office of Rare Diseases Research at the National Center for Advancing Translational Sciences). Dr. Perlmutter serves as Director of Medical and Scientific Advisory Committee of the Dystonia Medical Research Foundation, Chair of the Professional Standards and Ethics Committee of the Huntington Study Group, member of the Scientific Advisory Board of the APDA, Chair of the Scientific and Publication Committee for ENROLL-HD, and member of the Education Committee of the Huntington Study Group. H. A. Jinnah has active or recent grant support from the US government (National Institutes of Health), private philanthropic organizations (Cure Dystonia Now), academically-oriented institutions (the Dystonia Study Group), and industry (Cavion Therapeutics, Ipsen Pharmaceuticals, Retrophin Inc.). Dr. Jinnah has also served on advisory boards or as a consultant for Allergan Inc., CoA Therapeutics, Cavion Therapeutics, and Retrophin Inc. He has received honoraria or stipends for lectures or administrative work from the American Academy of Neurology, the American Neurological Association, the Dystonia Medical Research Foundation, the International Neurotoxin Society, and the International Parkinson’s Disease and Movement Disorders Society. Dr. Jinnah serves on the Scientific Advisory Boards for several private foundations including the Benign Essential Blepharospasm Research Foundation, Cure Dystonia Now, the Dystonia Medical Research Foundation, the Tourette Association of America, and Tyler's Hope for a Cure. He also is principle investigator for the Dystonia Coalition, which has received the majority of its support through the NIH (grants NS116025, NS065701 from the National Institutes of Neurological Disorders and Stroke TR 001456 from the Office of Rare Diseases Research at the National Center for Advancing Translational Sciences). The Dystonia Coalition has received additional material or administrative support from industry sponsors (Allergan Inc. and Merz Pharmaceuticals) as well as private foundations (The American Dystonia Society, Beat Dystonia, The Benign Essential Blepharospasm Foundation, Cure Dystonia Now, Dystonia Europe, Dystonia Inc., Dystonia Ireland, The Dystonia Medical Research Foundation, The Foundation for Dystonia Research, The National Spasmodic Dysphonia Association, and The National Spasmodic Torticollis Association). Valerie Brandt receives funding from the Academy of Medical Sciences. Dr. Brüggemann received honaria from Abbott, Abbvie, Biogen, Biomarin, Bridgebio, Centogene, Esteve, Zambon. Dr. Brüggemann was supported by the DFG (BR4328.2–1, GRK1957), the Michael J Fox Foundation, the Collaborative Center for X-linked Dystonia-Parkinsonism and the EU Joint Programme—Neurodegenerative Disease Research (JPND).