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May 11, 2021; 96 (19) ArticleOpen Access

Timing and Impact of Psychiatric, Cognitive, and Motor Abnormalities in Huntington Disease

View ORCID ProfileBranduff McAllister, James F. Gusella, G. Bernhard Landwehrmeyer, Jong-Min Lee, Marcy E. MacDonald, Michael Orth, Anne E. Rosser, Nigel M. Williams, View ORCID ProfilePeter Holmans, Lesley Jones, View ORCID ProfileThomas H. Massey, on behalf of the REGISTRY Investigators of the European Huntington's Disease Network
First published March 25, 2021, DOI: https://doi.org/10.1212/WNL.0000000000011893
Branduff McAllister
From the Division of Psychological Medicine and Clinical Neurosciences (B.M., N.M.W., P.H., L.J., T.H.M.), Brain Repair Group (A.E.R.), Schools of Medicine and Biosciences, and Neuroscience and Mental Health Research Institute (A.E.R.), Cardiff University, UK; Molecular Neurogenetic Unit (J.F.G., J.-M.L., M.E.M.), Center for Genomic Medicine, Massachusetts General Hospital; Department of Genetics (J.F.G., J.-M.L., M.E.M.), Harvard Medical School, Boston, MA; Department of Neurology (G.B.L.), University of Ulm, Germany; and Swiss Huntington's Disease Centre (M.O.), Siloah, Bern, Switzerland.
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James F. Gusella
From the Division of Psychological Medicine and Clinical Neurosciences (B.M., N.M.W., P.H., L.J., T.H.M.), Brain Repair Group (A.E.R.), Schools of Medicine and Biosciences, and Neuroscience and Mental Health Research Institute (A.E.R.), Cardiff University, UK; Molecular Neurogenetic Unit (J.F.G., J.-M.L., M.E.M.), Center for Genomic Medicine, Massachusetts General Hospital; Department of Genetics (J.F.G., J.-M.L., M.E.M.), Harvard Medical School, Boston, MA; Department of Neurology (G.B.L.), University of Ulm, Germany; and Swiss Huntington's Disease Centre (M.O.), Siloah, Bern, Switzerland.
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G. Bernhard Landwehrmeyer
From the Division of Psychological Medicine and Clinical Neurosciences (B.M., N.M.W., P.H., L.J., T.H.M.), Brain Repair Group (A.E.R.), Schools of Medicine and Biosciences, and Neuroscience and Mental Health Research Institute (A.E.R.), Cardiff University, UK; Molecular Neurogenetic Unit (J.F.G., J.-M.L., M.E.M.), Center for Genomic Medicine, Massachusetts General Hospital; Department of Genetics (J.F.G., J.-M.L., M.E.M.), Harvard Medical School, Boston, MA; Department of Neurology (G.B.L.), University of Ulm, Germany; and Swiss Huntington's Disease Centre (M.O.), Siloah, Bern, Switzerland.
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Jong-Min Lee
From the Division of Psychological Medicine and Clinical Neurosciences (B.M., N.M.W., P.H., L.J., T.H.M.), Brain Repair Group (A.E.R.), Schools of Medicine and Biosciences, and Neuroscience and Mental Health Research Institute (A.E.R.), Cardiff University, UK; Molecular Neurogenetic Unit (J.F.G., J.-M.L., M.E.M.), Center for Genomic Medicine, Massachusetts General Hospital; Department of Genetics (J.F.G., J.-M.L., M.E.M.), Harvard Medical School, Boston, MA; Department of Neurology (G.B.L.), University of Ulm, Germany; and Swiss Huntington's Disease Centre (M.O.), Siloah, Bern, Switzerland.
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Marcy E. MacDonald
From the Division of Psychological Medicine and Clinical Neurosciences (B.M., N.M.W., P.H., L.J., T.H.M.), Brain Repair Group (A.E.R.), Schools of Medicine and Biosciences, and Neuroscience and Mental Health Research Institute (A.E.R.), Cardiff University, UK; Molecular Neurogenetic Unit (J.F.G., J.-M.L., M.E.M.), Center for Genomic Medicine, Massachusetts General Hospital; Department of Genetics (J.F.G., J.-M.L., M.E.M.), Harvard Medical School, Boston, MA; Department of Neurology (G.B.L.), University of Ulm, Germany; and Swiss Huntington's Disease Centre (M.O.), Siloah, Bern, Switzerland.
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Michael Orth
From the Division of Psychological Medicine and Clinical Neurosciences (B.M., N.M.W., P.H., L.J., T.H.M.), Brain Repair Group (A.E.R.), Schools of Medicine and Biosciences, and Neuroscience and Mental Health Research Institute (A.E.R.), Cardiff University, UK; Molecular Neurogenetic Unit (J.F.G., J.-M.L., M.E.M.), Center for Genomic Medicine, Massachusetts General Hospital; Department of Genetics (J.F.G., J.-M.L., M.E.M.), Harvard Medical School, Boston, MA; Department of Neurology (G.B.L.), University of Ulm, Germany; and Swiss Huntington's Disease Centre (M.O.), Siloah, Bern, Switzerland.
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Anne E. Rosser
From the Division of Psychological Medicine and Clinical Neurosciences (B.M., N.M.W., P.H., L.J., T.H.M.), Brain Repair Group (A.E.R.), Schools of Medicine and Biosciences, and Neuroscience and Mental Health Research Institute (A.E.R.), Cardiff University, UK; Molecular Neurogenetic Unit (J.F.G., J.-M.L., M.E.M.), Center for Genomic Medicine, Massachusetts General Hospital; Department of Genetics (J.F.G., J.-M.L., M.E.M.), Harvard Medical School, Boston, MA; Department of Neurology (G.B.L.), University of Ulm, Germany; and Swiss Huntington's Disease Centre (M.O.), Siloah, Bern, Switzerland.
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Nigel M. Williams
From the Division of Psychological Medicine and Clinical Neurosciences (B.M., N.M.W., P.H., L.J., T.H.M.), Brain Repair Group (A.E.R.), Schools of Medicine and Biosciences, and Neuroscience and Mental Health Research Institute (A.E.R.), Cardiff University, UK; Molecular Neurogenetic Unit (J.F.G., J.-M.L., M.E.M.), Center for Genomic Medicine, Massachusetts General Hospital; Department of Genetics (J.F.G., J.-M.L., M.E.M.), Harvard Medical School, Boston, MA; Department of Neurology (G.B.L.), University of Ulm, Germany; and Swiss Huntington's Disease Centre (M.O.), Siloah, Bern, Switzerland.
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Peter Holmans
From the Division of Psychological Medicine and Clinical Neurosciences (B.M., N.M.W., P.H., L.J., T.H.M.), Brain Repair Group (A.E.R.), Schools of Medicine and Biosciences, and Neuroscience and Mental Health Research Institute (A.E.R.), Cardiff University, UK; Molecular Neurogenetic Unit (J.F.G., J.-M.L., M.E.M.), Center for Genomic Medicine, Massachusetts General Hospital; Department of Genetics (J.F.G., J.-M.L., M.E.M.), Harvard Medical School, Boston, MA; Department of Neurology (G.B.L.), University of Ulm, Germany; and Swiss Huntington's Disease Centre (M.O.), Siloah, Bern, Switzerland.
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  • ORCID record for Peter Holmans
Lesley Jones
From the Division of Psychological Medicine and Clinical Neurosciences (B.M., N.M.W., P.H., L.J., T.H.M.), Brain Repair Group (A.E.R.), Schools of Medicine and Biosciences, and Neuroscience and Mental Health Research Institute (A.E.R.), Cardiff University, UK; Molecular Neurogenetic Unit (J.F.G., J.-M.L., M.E.M.), Center for Genomic Medicine, Massachusetts General Hospital; Department of Genetics (J.F.G., J.-M.L., M.E.M.), Harvard Medical School, Boston, MA; Department of Neurology (G.B.L.), University of Ulm, Germany; and Swiss Huntington's Disease Centre (M.O.), Siloah, Bern, Switzerland.
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Thomas H. Massey
From the Division of Psychological Medicine and Clinical Neurosciences (B.M., N.M.W., P.H., L.J., T.H.M.), Brain Repair Group (A.E.R.), Schools of Medicine and Biosciences, and Neuroscience and Mental Health Research Institute (A.E.R.), Cardiff University, UK; Molecular Neurogenetic Unit (J.F.G., J.-M.L., M.E.M.), Center for Genomic Medicine, Massachusetts General Hospital; Department of Genetics (J.F.G., J.-M.L., M.E.M.), Harvard Medical School, Boston, MA; Department of Neurology (G.B.L.), University of Ulm, Germany; and Swiss Huntington's Disease Centre (M.O.), Siloah, Bern, Switzerland.
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  • ORCID record for Thomas H. Massey
From the Division of Psychological Medicine and Clinical Neurosciences (B.M., N.M.W., P.H., L.J., T.H.M.), Brain Repair Group (A.E.R.), Schools of Medicine and Biosciences, and Neuroscience and Mental Health Research Institute (A.E.R.), Cardiff University, UK; Molecular Neurogenetic Unit (J.F.G., J.-M.L., M.E.M.), Center for Genomic Medicine, Massachusetts General Hospital; Department of Genetics (J.F.G., J.-M.L., M.E.M.), Harvard Medical School, Boston, MA; Department of Neurology (G.B.L.), University of Ulm, Germany; and Swiss Huntington's Disease Centre (M.O.), Siloah, Bern, Switzerland.
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Timing and Impact of Psychiatric, Cognitive, and Motor Abnormalities in Huntington Disease
Branduff McAllister, James F. Gusella, G. Bernhard Landwehrmeyer, Jong-Min Lee, Marcy E. MacDonald, Michael Orth, Anne E. Rosser, Nigel M. Williams, Peter Holmans, Lesley Jones, Thomas H. Massey, on behalf of the REGISTRY Investigators of the European Huntington's Disease Network
Neurology May 2021, 96 (19) e2395-e2406; DOI: 10.1212/WNL.0000000000011893

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Article Information

vol. 96 no. 19 e2395-e2406
DOI: 
https://doi.org/10.1212/WNL.0000000000011893
PubMed: 
33766994

Published By: 
Wolters Kluwer Health, Inc. on behalf of the American Academy of Neurology
Print ISSN: 
0028-3878
Online ISSN: 
1526-632X
History: 
  • Received July 31, 2020
  • Accepted in final form February 12, 2021
  • First Published March 25, 2021.

Article Versions

  • Previous version (March 25, 2021 - 12:45).
  • You are viewing the most recent version of this article.
Copyright & Usage: 
Copyright © 2021 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the American Academy of Neurology. This is an open access article distributed under the terms of the Creative Commons Attribution License 4.0 (CC BY), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Author Disclosures

    1. Branduff McAllister, BSc, PhD,
    2. James F. Gusella, PhD,
    3. G. Bernhard Landwehrmeyer, MD, PhD,
    4. Jong-Min Lee, PhD,
    5. Marcy E. MacDonald, PhD,
    6. Michael Orth, MD, PhD,
    7. Anne E. Rosser, MB BChir, FRCP, PhD,
    8. Nigel M. Williams, BSc, PhD,
    9. Peter Holmans, BA, PhD,
    10. Lesley Jones, BSc, PhD*,
    11. Thomas H. Massey, MA, BM BCh, DPhil*;
    12. on behalf of the REGISTRY Investigators of the European Huntington's Disease Network
  1. Branduff McAllister, BSc, PhD,
  2. Scientific Advisory Boards:
    1. NONE

    Gifts:
    1. NONE

    Funding for Travel or Speaker Honoraria:
    1. NONE

    Editorial Boards:
    1. NONE

    Patents:
    1. NONE

    Publishing Royalties:
    1. NONE

    Employment, Commercial Entity:
    1. NONE

    Consultancies:
    1. NONE

    Speakers' Bureaus:
    1. NONE

    Other Activities:
    1. NONE

    Clinical Procedures or Imaging Studies:
    1. NONE

    Research Support, Commercial Entities:
    1. NONE

    Research Support, Government Entities:
    1. NONE

    Research Support, Academic Entities:
    1. NONE

    Research Support, Foundations and Societies:
    1. NONE

    Stock/Stock Options/Board of Directors Compensation:
    1. NONE

    License Fee Payments, Technology or Inventions:
    1. NONE

    Royalty Payments, Technology or Inventions:
    1. NONE

    Stock/Stock Options, Research Sponsor:
    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:
    1. NONE

    Legal Proceedings:
    1. NONE

  3. James F. Gusella, PhD,
  4. Scientific Advisory Boards:
    1. 1) Triplet Therapeutics, Inc. 2) Familial Dysautonomia Foundation

    Gifts:
    1. NONE

    Funding for Travel or Speaker Honoraria:
    1. NONE

    Editorial Boards:
    1. 1) American Journal of Human Genetics, Board member, 1984-1987 2) Cytogenetics and Cell Genetics, Board member 1984- 1989 3) DNA and Cell Biology, Board member, 1984- 4) Reviews in the Neurosciences, Board member, 1984-2004 5) Molecular Brain Research, Board member, 1985-2005 6) Molecular and Cellular Probes, Board member, 1986- 2015 7) Genomics, Board member, 1987-1997 8) Somatic Cell and Molecular Genetics, Board member, 1989-2002 9) Neuropsychiatric Genetics, Section of American Journal of Medical Genetics, Board member, 1992-2006 10) Neurobiology of Disease, Board member, 1994-2015 11) Neurogenetics, Board member, 1997-2015 12) Biomed Central Neuroscience, Board member, 2000-2020 13) Biomed Central Biology, Board member, 2003- 14) Molecular Autism, Board member, 2009- 15) Journal of Huntington’s Disease, Board member, 2012- 16) Human Genetics, Board Member, 2017-

    Patents:
    1. 1) Gusella JF, Housman D, Keys C, Varsanyi-Breiner A, Puck TT, Jones C, Kao FT, inventors; Massachusetts Institute of Technology, assignee. Isolation and localization of DNA segments. US Patent 4,594,318. Jun. 10, 1986. 2) Gusella JF, inventor; The General Hospital Corporation, assignee. Test for Huntington's disease. US Patent 4,666,828. May 19, 1987. 3) MacDonald ME, Gusella JF, Ambrose CM, inventors; The General Hospital Corporation, assignee. DNA encoding a protein-coupled receptor kinase. US Patent 5,366,889. Nov. 22, 1994. 4) Blumenfeld A, Gusella JF, inventors; The General Hospital Corporation, assignee. Use of genetic markers to diagnose familial dysautonomia. US Patent 5,387,506. Feb. 7, 1995. 5) Duyao MP, MacDonald ME, Gusella JF, inventors; The General Hospital Corporation, assignee. Transport protein gene from the Huntington's disease region. US Patent 5,538,844. Jul. 23, 1996. 6) MacDonald ME, Ambrose CM, Duyao MP, Gusella JF, inventors; The General Hospital Corporation, assignee. Huntingtin DNA, protein and uses thereof . US Patent 5,686,288. Nov. 11, 1997. 7) MacDonald ME, Ambrose CM, Duyao MP, Gusella JF, inventors; The General Hospital Corporation, assignee. Huntingtin DNA, protein and uses thereof . US Patent 5,693,757. Dec. 2, 1997. 8) Trofatter JA, MacCollin MM, Gusella; JF, inventors; The General Hospital Corporation, assignee. Tumor suppressor gene merlin. US Patent 5,707,863. Jan. 13, 1998. 9) Murthy AE, Gusella JF, inventors; The General Hospital Corporation, assignee. TPR-containing genes. US patent 5,935,851. Aug. 10, 1999. 10) Blumenfeld A, Gusella JF, inventors; The General Hospital Corporation, assignee. Use of genetic markers to diagnose familial dysautonomia. US Patent 5,998,133. Dec. 7, 1999. 11) Trofatter JA, MacCollin MM, Gusella; JF, inventors; The General Hospital Corporation, assignee. Tumor suppressor gene merlin and antibodies thereof. US Patent 6,077,685. Jun. 20, 2000. 12) Blumenfeld A, Gusella JF, Breakefield, XO, Slaugenhaupt, S. inventors, The General Hospital Corporation, assignee. Kits for detecting polymorphisms associated with familial dysautonomia. US Patent 6,262,250. Jul. 17, 2001. 13) Slaugenhaupt S, Gusella JF. Gene for identifying individuals with Familial Dysautonomia. US Patent 7,388,093. Jun. 17, 2008. 14) Slaugenhaupt S, Gusella JF. Methods for detecting mutations associated with familial dysautonomia. Patent 7,407,756. Aug. 5, 2008. 15) Slaugenhaupt S, Gusella JF. Methods for altering mRNA splicing and treating familial dysautonomia and other mechanistically related disorders. Patent 7,737,110. June 15, 2010. 16) Slaugenhaupt S, Gusella JF. Methods for altering mRNA splicing and treating familial dysautonomia by administering kinetin, benzyladenine, and tocotrienols. Patent 8,729,025. May 20, 2014. 17) Slaugenhaupt S, Gusella JF. Methods for altering mRNA splicing and treating familial dysautonomia by administering benzyladenine. Patent 9,265,766. February 23, 2016.

    Publishing Royalties:
    1. NONE

    Employment, Commercial Entity:
    1. NONE

    Consultancies:
    1. 1) Triplet Therapeutics, Inc. 2) Wave Life Sciences USA, Inc. 3) Warren Alpert Foundation

    Speakers' Bureaus:
    1. NONE

    Other Activities:
    1. NONE

    Clinical Procedures or Imaging Studies:
    1. NONE

    Research Support, Commercial Entities:
    1. 1) Levo Pharmaceuticals

    Research Support, Government Entities:
    1. 1) NIH/NINDS R01NS093200, PI, 2015-2020 2) NIH/NINDS R01NS091161, PI, 2015-2025 3) NIH/NIGMS P01GM061354, Project Leader, 2015-2020 4) NIH/NINDS R01NS102423, Co-Inv, 2017-2022 5) NIH/NICHD R01HD096326, Co-Inv, 2018-2023

    Research Support, Academic Entities:
    1. NONE

    Research Support, Foundations and Societies:
    1. 1) CHDI Foundation Inc., A2690, PI, 2009-2021 2) S Sydney DeYoung Foundation, 2012-2021

    Stock/Stock Options/Board of Directors Compensation:
    1. 1) Triplet Therapeutics, Inc. Stock/Stock Options, Medical Equipment & Materials: 1) Eli Lilly, 2020- 2) Abbot, 2011- 3) Abbvie, 2013- 4) Johnson and Johnson, 2011- 5) Medtronic, 2015 6) CVS, 2018-

    License Fee Payments, Technology or Inventions:
    1. NONE

    Royalty Payments, Technology or Inventions:
    1. NONE

    Stock/Stock Options, Research Sponsor:
    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:
    1. NONE

    Legal Proceedings:
    1. NONE

  5. G. Bernhard Landwehrmeyer, MD, PhD,
  6. Scientific Advisory Boards:
    1. (1) Hoffmann-La Roche (2) AOP Orphan (3) CHDI (4) Lundbeck (5) PTC Pharmaceuticals (6) Novartis (7) Roche Pharma AG (8) Acadia Pharm (9) Triplet (10) Takeda (11) NeuraMetrix

    Gifts:
    1. NONE

    Funding for travel or speaker honoraria:
    1. (1) Hoffmann-La Roche, received travel expenses and/or honoraria for lectures or educational activities not funded by industry. (2) AOP Orphan, received travel expenses and/or honoraria for lectures or educational activities not funded by industry. (3) CHDI, received travel expenses and/or honoraria for lectures or educational activities not funded by industry. (4) Lundbeck, received travel expenses and/or honoraria for lectures or educational activities not funded by industry. (5) PTC, received travel expenses and/or honoraria for lectures or educational activities not funded by industry. (6) Novartis, received travel expenses and/or honoraria for lectures or educational activities not funded by industry. (7) Roche Pharma AG, received travel expenses and/or honoraria for lectures or educational activities not funded by industry. (8) Acadia Pharm, received travel expenses and/or honoraria for lectures or educational activities not funded by industry. (9) Triplet, received travel expenses and/or honoraria for lectures or educational activities not funded by industry. (10) Takeda, received travel expenses and/or honoraria for lectures or educational activities not funded by industry.

    Editorial Boards:
    1. NONE

    Patents:
    1. NONE

    Publishing Royalties:
    1. Juvenile Huntington's Disease, Oxford University Press, 2009

    Employment, Commercial Entity:
    1. NONE

    Consultancies:
    1. (1) CHDI (2) Hoffmann-La Roche (3) Lundbeck (4) PTC (5) AOP Orphan (6) Novartis (7) Roche Pharma AG (8) Acadia Pharma (9) Takeda (10) NeuraMetrix

    Speakers' Bureaus:
    1. NONE

    Other activities:
    1. (1) CHDI, funding (2) EU (FP6&7), research grant/funding (3) BMBF, research grant/funding (4) DFG, research grant/funding (5) JPND, research grant/funding

    Clinical Procedures or Imaging Studies:
    1. NONE

    Research Support, Commercial Entities:
    1. (1) CHDI Foundation: Enroll-HD: A Prospective Registry Study in a Global Huntington Disease (HD) Cohort, Observational, prospective, multi-national, multi-centre study, Global PI (2) Hoffmann-La Roche: Natural History, BN40422, multi-centre, longitudinal cohort study measuring CSF in HD patients, PI, study site Ulm (3) Hoffmann-La Roche: Phase III, BN40423, randomized, multi-centre, double-blind study to evaluate efficacy of RG6042 in manifest HD patients, PI, study site Ulm & Germany (4)Hoffmann-La Roche: GEN-EXTEND, BN40955, open-label extension study to evaluate long-term safety of RG6042 in HD patients, PI, study site Ulm & Germany (5) HDClarity, multi-centre CSF collection study for HD patients, Investigator (6) PACE-HD,Physical Activity and Exercise outcomes in HD, longitudinal cohort study, PI study site Ulm (7) Ionis: Ionis-HTTRx in early manifest HD patients, double-blind, placebo controlled study, PI for study site Ulm & Germany

    Research Support, Government Entities:
    1. NONE

    Research Support, Academic Entities:
    1. NONE

    Research Support, Foundations and Societies:
    1. (1) Received grant support from CHDI - Cure Huntington's Disease Initiative Foundation (2) Was Executive Committee Chair (2004-2014)of EHDN - European Huntington's Disease Network

    Stock/Stock Options/Board of Directors Compensation:
    1. NONE

    License Fee Payments, Technology or Inventions:
    1. NONE

    Royalty Payments, Technology or Inventions:
    1. NONE

    Stock/Stock Options, Research Sponsor:
    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:
    1. NONE

    Legal Proceedings:
    1. NONE

  7. Jong-Min Lee, PhD,
  8. Scientific Advisory Boards:
    1. 1. GenEdit Inc. (Commercial)

    Gifts:
    1. NONE

    Funding for Travel or Speaker Honoraria:
    1. NONE

    Editorial Boards:
    1. NONE

    Patents:
    1. NONE

    Publishing Royalties:
    1. NONE

    Employment, Commercial Entity:
    1. NONE

    Consultancies:
    1. NONE

    Speakers' Bureaus:
    1. NONE

    Other Activities:
    1. NONE

    Clinical Procedures or Imaging Studies:
    1. NONE

    Research Support, Commercial Entities:
    1. NONE

    Research Support, Government Entities:
    1. NINDS, R01, NS119471, PI, 5 years

    Research Support, Academic Entities:
    1. NONE

    Research Support, Foundations and Societies:
    1. NONE

    Stock/Stock Options/Board of Directors Compensation:
    1. 1. Commercial. Stock option from GenEdit Inc.

    License Fee Payments, Technology or Inventions:
    1. NONE

    Royalty Payments, Technology or Inventions:
    1. NONE

    Stock/Stock Options, Research Sponsor:
    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:
    1. NONE

    Legal Proceedings:
    1. NONE

  9. Marcy E. MacDonald, PhD,
  10. Scientific Advisory Boards:
    1. (2) Huntington's Disease Society of American Scientific Review Board (non- profit, not compensated).

    Gifts:
    1. NONE

    Funding for Travel or Speaker Honoraria:
    1. NONE

    Editorial Boards:
    1. NONE

    Patents:
    1. NONE

    Publishing Royalties:
    1. NONE

    Employment, Commercial Entity:
    1. NONE

    Consultancies:
    1. NONE

    Speakers' Bureaus:
    1. NONE

    Other Activities:
    1. NONE

    Clinical Procedures or Imaging Studies:
    1. NONE

    Research Support, Commercial Entities:
    1. NONE

    Research Support, Government Entities:
    1. NIH NSR01NS091161 (co-investigator) NIH NSR01NS106384 (co-investigator)

    Research Support, Academic Entities:
    1. NONE

    Research Support, Foundations and Societies:
    1. CHDI Foundation, Inc.

    Stock/Stock Options/Board of Directors Compensation:
    1. NONE

    License Fee Payments, Technology or Inventions:
    1. NONE

    Royalty Payments, Technology or Inventions:
    1. NONE

    Stock/Stock Options, Research Sponsor:
    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:
    1. NONE

    Legal Proceedings:
    1. NONE

  11. Michael Orth, MD, PhD,
  12. Scientific Advisory Boards:
    1. Voyager Therapeutics, Inc.

    Gifts:
    1. NONE

    Funding for Travel or Speaker Honoraria:
    1. NONE

    Editorial Boards:
    1. NONE

    Patents:
    1. NONE

    Publishing Royalties:
    1. NONE

    Employment, Commercial Entity:
    1. NONE

    Consultancies:
    1. NONE

    Speakers' Bureaus:
    1. NONE

    Other Activities:
    1. NONE

    Clinical Procedures or Imaging Studies:
    1. NONE

    Research Support, Commercial Entities:
    1. NONE

    Research Support, Government Entities:
    1. NONE

    Research Support, Academic Entities:
    1. NONE

    Research Support, Foundations and Societies:
    1. NONE

    Stock/Stock Options/Board of Directors Compensation:
    1. NONE

    License Fee Payments, Technology or Inventions:
    1. NONE

    Royalty Payments, Technology or Inventions:
    1. NONE

    Stock/Stock Options, Research Sponsor:
    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:
    1. NONE

    Legal Proceedings:
    1. NONE

  13. Anne E. Rosser, MB BChir, FRCP, PhD,
  14. Scientific Advisory Boards:
    1. 1. Triplet Scientific Advisory Board 2. WAVE Life Sciences Scientific Advisory Board 3. Roche Scientific Advisory Board 4. Huntington's Study Group Steering Committee

    Gifts:
    1. NONE

    Funding for travel or speaker honoraria:
    1. 1. Cambridge Neuroscience, travel funding 2. Cure Huntington's Disease Initiative, travel funding 3. Guarantors of BRAIN, travel funding 4. University of Leicester, travel funding 5. CIRM, honorarium 6. AMND 2019, travel funding 7. Gordon Research Conferences, travel funding, honorarium 8. European Huntington's Disease Network, travel funding 9. Roche, travel funding, honorarium

    Editorial Boards:
    1. Brain Communications, Associate Editor, 2020

    Patents:
    1. NONE

    Publishing Royalties:
    1. NONE

    Employment, Commercial Entity:
    1. Schools of Bioscience and Medicine Cardiff University Museum Avenue cardiff CF10 3AX

    Consultancies:
    1. Wave Life Sciences

    Speakers' Bureaus:
    1. NONE

    Other activities:
    1. 1. European Huntington's Disease Network, Chair of Executive Committee 2. Guarantors of BRAIN, Chair of Board of Management

    Clinical Procedures or Imaging Studies:
    1. NONE

    Research Support, Commercial Entities:
    1. 1. Roche 2. Wave Life Sciences 3. Triplet Therapeutics 4. HSG Prilenia 5. Ionis Pharmaceuticals

    Research Support, Government Entities:
    1. Medical Research Council, 513862, PI, 010518-310821 HCRW, 512818, PI, 011017-280222 HCRW, 514033, PI, 010418 - 310321 HCRW, 517188, PI, 010420 - 310323 EU, 515071, PI, 011018 - 300922

    Research Support, Academic Entities:
    1. Hashemite University

    Research Support, Foundations and Societies:
    1. Parkinson's UK European Huntington Disease network Cure Huntington's Disease Initiative Jacque and Gloria Gossweiler Cure Alzheimer's Research in Europe

    Stock/Stock Options/Board of Directors Compensation:
    1. NONE

    License Fee Payments, Technology or Inventions:
    1. NONE

    Royalty Payments, Technology or Inventions:
    1. NONE

    Stock/Stock Options, Research Sponsor:
    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:
    1. NONE

    Legal Proceedings:
    1. NONE

  15. Nigel M. Williams, BSc, PhD,
  16. Scientific Advisory Boards:
    1. NONE

    Gifts:
    1. NONE

    Funding for Travel or Speaker Honoraria:
    1. NONE

    Editorial Boards:
    1. NONE

    Patents:
    1. NONE

    Publishing Royalties:
    1. NONE

    Employment, Commercial Entity:
    1. NONE

    Consultancies:
    1. NONE

    Speakers' Bureaus:
    1. NONE

    Other Activities:
    1. NONE

    Clinical Procedures or Imaging Studies:
    1. NONE

    Research Support, Commercial Entities:
    1. NONE

    Research Support, Government Entities:
    1. NONE

    Research Support, Academic Entities:
    1. NONE

    Research Support, Foundations and Societies:
    1. Parkinson's UK Alzheimer's Research UK

    Stock/Stock Options/Board of Directors Compensation:
    1. NONE

    License Fee Payments, Technology or Inventions:
    1. NONE

    Royalty Payments, Technology or Inventions:
    1. NONE

    Stock/Stock Options, Research Sponsor:
    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:
    1. NONE

    Legal Proceedings:
    1. NONE

  17. Peter Holmans, BA, PhD,
  18. Scientific Advisory Boards:
    1. (1) European Huntington's Disease Network (EHDN) (2) ENROLL-HD

    Gifts:
    1. NONE

    Funding for Travel or Speaker Honoraria:
    1. NONE

    Editorial Boards:
    1. (1) Annals of Human Genetics, Editorial Board, 2017-

    Patents:
    1. NONE

    Publishing Royalties:
    1. NONE

    Employment, Commercial Entity:
    1. (1) Cardiff University, Professor of Biostatistics & Genetic Epidemiology

    Consultancies:
    1. NONE

    Speakers' Bureaus:
    1. NONE

    Other Activities:
    1. NONE

    Clinical Procedures or Imaging Studies:
    1. NONE

    Research Support, Commercial Entities:
    1. NONE

    Research Support, Government Entities:
    1. NONE

    Research Support, Academic Entities:
    1. NONE

    Research Support, Foundations and Societies:
    1. (1)CHDI Foundation, Grant A-14040

    Stock/Stock Options/Board of Directors Compensation:
    1. NONE

    License Fee Payments, Technology or Inventions:
    1. NONE

    Royalty Payments, Technology or Inventions:
    1. NONE

    Stock/Stock Options, Research Sponsor:
    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:
    1. NONE

    Legal Proceedings:
    1. NONE

  19. Lesley Jones, BSc, PhD*,
  20. Scientific Advisory Boards:
    1. (1)LoQus23 Therapeutics (2)Triplet Therapeutics

    Gifts:
    1. NONE

    Funding for Travel or Speaker Honoraria:
    1. NONE

    Editorial Boards:
    1. NONE

    Patents:
    1. NONE

    Publishing Royalties:
    1. NONE

    Employment, Commercial Entity:
    1. NONE

    Consultancies:
    1. NONE

    Speakers' Bureaus:
    1. NONE

    Other Activities:
    1. NONE

    Clinical Procedures or Imaging Studies:
    1. NONE

    Research Support, Commercial Entities:
    1. (1)LoQus23 Therapeutics

    Research Support, Government Entities:
    1. (1)Medical Research Council, UK MR/L010505/1, co-PI, 2014-2019

    Research Support, Academic Entities:
    1. NONE

    Research Support, Foundations and Societies:
    1. (1)CHDI (2)Brain Research Trust, UK (3)Wellcome Trust (4)Alzheimer's Research UK

    Stock/Stock Options/Board of Directors Compensation:
    1. NONE

    License Fee Payments, Technology or Inventions:
    1. NONE

    Royalty Payments, Technology or Inventions:
    1. NONE

    Stock/Stock Options, Research Sponsor:
    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:
    1. NONE

    Legal Proceedings:
    1. NONE

  21. Thomas H. Massey, MA, BM BCh, DPhil*;
  22. Scientific Advisory Boards:
    1. NONE

    Gifts:
    1. NONE

    Funding for Travel or Speaker Honoraria:
    1. NONE

    Editorial Boards:
    1. NONE

    Patents:
    1. NONE

    Publishing Royalties:
    1. NONE

    Employment, Commercial Entity:
    1. NONE

    Consultancies:
    1. NONE

    Speakers' Bureaus:
    1. NONE

    Other Activities:
    1. NONE

    Clinical Procedures or Imaging Studies:
    1. NONE

    Research Support, Commercial Entities:
    1. NONE

    Research Support, Government Entities:
    1. (1) Medical Research Council (MRC), MR/P001629/1, Clinical Research Training Fellow, 2016-2020 (2) Welsh Clinical Academic Track (WCAT), WAL/006-ACA/7040601, Clinical Training Fellow

    Research Support, Academic Entities:
    1. NONE

    Research Support, Foundations and Societies:
    1. (1) Patrick Berthoud Charitable Trust

    Stock/Stock Options/Board of Directors Compensation:
    1. NONE

    License Fee Payments, Technology or Inventions:
    1. NONE

    Royalty Payments, Technology or Inventions:
    1. NONE

    Stock/Stock Options, Research Sponsor:
    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:
    1. NONE

    Legal Proceedings:
    1. NONE

  23. on behalf of the REGISTRY Investigators of the European Huntington's Disease Network
  1. From the Division of Psychological Medicine and Clinical Neurosciences (B.M., N.M.W., P.H., L.J., T.H.M.), Brain Repair Group (A.E.R.), Schools of Medicine and Biosciences, and Neuroscience and Mental Health Research Institute (A.E.R.), Cardiff University, UK; Molecular Neurogenetic Unit (J.F.G., J.-M.L., M.E.M.), Center for Genomic Medicine, Massachusetts General Hospital; Department of Genetics (J.F.G., J.-M.L., M.E.M.), Harvard Medical School, Boston, MA; Department of Neurology (G.B.L.), University of Ulm, Germany; and Swiss Huntington's Disease Centre (M.O.), Siloah, Bern, Switzerland.
  1. Correspondence
    Dr. Massey masseyt1{at}cardiff.ac.uk
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Cited By...

  • 15 Citations
  • Google Scholar

Letters: Rapid online correspondence

  • Author Response: Timing and Impact of Psychiatric, Cognitive, and Motor Abnormalities in Huntington Disease
    • Thomas H Massey, Clinical Academic Neurologist, Cardiff University
    • Branduff McAllister, Research Associate, Cardiff University
    • Anne E Rosser, Professor, Cardiff University
    • Lesley Jones, Professor, Cardiff University
    Submitted December 10, 2021
  • Reader Response: Timing and Impact of Psychiatric, Cognitive, and Motor Abnormalities in Huntington Disease
    • Thomas D Bird, Professor, University of Washington, Seattle, WA, USA
    • Herwig Lange, Professor, George Huntington Institute, Muenster, Germany
    • Travis Cruickshank, Professor, Centre for Precision Health, Perth, Australia
    • Matthias Dose, Professor, Kliniken des Bezirks Oberbayern, Munchen, Germany
    • Clare Eddy, Professor, Birmingham & Solihull Mental Health, NHS Foundation Trust, National Centre for Mental Health, University of Birmingham, UK
    • Mayke Oosterloo, Professor, Maastricht UMC, Maastricht, The Netherlands
    • Jane S. Paulsen, Professor, University of Wisconsin, Madison, WI, USA
    • Ralf Reilmann, Professor, George Huntington Institute, Muenster, Germany
    • Hugh Rickards, Professor, Birmingham & Solihull Mental Health, NHS Foundation Trust, National Centre for Mental Health, University of Birmingham, UK
    • Raymund A.C. Roos, Professor, Department of Neurology, LUMC, Leiden, The Netherlands
    • Adolf Weindl, Professor, Department of Neurology, Technical University of Munich, Munich, Germany
    Submitted October 18, 2021
  • Reader Response: Timing and Impact of Psychiatric, Cognitive, and Motor Abnormalities in Huntington Disease
    • Ciaran M. Considine, Assistant Professor of Neurology, Vanderbilt University Medical Center
    • Mary Edmondson, Founding Medical Director of HD Reach, Vidant Behavioral Health
    • Erin Stimming, Associate Professor of Neurology and Director of the Huntington Disease Center of Excellence, McGovern Medical School at University of Texas Health Science Center-Houston
    • Claudia Testa, Professor of Neurology and Founding Director of the Huntington Disease Center of Excellence, Virginia Commonwealth University
    • Karen E. Anderson, Professor of Neurology & Psychiatry, Director of the Huntington’s Disease Care, Education & Research Center at MedStar, Georgetown University Hospital
    • Daniel O. Claassen, Associate Professor of Neurology, Division Chief of Behavioral & Cognitive Neurology, Director of the Huntington Disease Cen, Vanderbilt University Medical Center
    Submitted April 29, 2021
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