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Abstract

Objective

We studied the performance of a 15-item, health-related quality-of-life polyneuropathy scale in the clinic setting in patients with diabetic distal sensorimotor polyneuropathy (DSPN).

Methods

Patients with DSPN from 11 academic sites completed a total of 231 Chronic Acquired Polyneuropathy Patient-Reported Index (CAPPRI) scales during their clinic visits. Conventional and modern psychometric analyses were performed on the completed forms.

Results

Conventional and modern analyses generally indicated excellent psychometric properties of the CAPPRI in patients with DSPN. For example, the CAPPRI demonstrated unidimensionality and performed like an interval-level scale.

Conclusion

Attributes of the CAPPRI for DSPN include ease of use and interpretation; unidimensionality, allowing scores to be summed; adequate coverage of disease severity; and the scale's ability to address relevant life domains. Furthermore, the CAPPRI is free and in the public domain. The CAPPRI may assist the clinician and patient with DSPN in estimating disease-specific quality of life, especially in terms of pain, sleep, psychological well-being, and everyday function. The CAPPRI may be most useful in the everyday clinical setting but merits further study in this setting, as well as the clinical trial setting.

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References

1.
World Health Organization. Diabetes Fact Sheet [online]. 2017. Available at: who.int/mediacentre/factsheets/fs312/en/. Accessed December 2017.
2.
Centers for Disease Control and Prevention. National Diabetes Statistics Report, 2017. Atlanta: Centers for Disease Control and Prevention, US Department of Health and Human Services; 2017.
3.
Pop-Busui R, Boulton AJM, Feldman EL, et al. Diabetic neuropathy: a position statement by the American Diabetes Association. Diabetes Care 2017;40:136–154.
4.
Barrett EJ, Liu Z, Khamaisi M, et al. Diabetic microvascular disease: an Endocrine Society scientific statement. J Clin Endocrinol Metab 2017;102:4343–4410.
5.
Dyck PJ, Albers JW, Anderson H, et al; Toronto Expert Panel on Diabetic Neuropathy. Diabetic polyneuropathies: update on research definition, diagnostic criteria and estimation of severity. Diabetes Metab Res Rev 2011;27:620–628.
6.
Bril V, England J, Franklin GM, et al; American Academy of Neurology; American Association of Neuromuscular and Electrodiagnostic Medicine; American Academy of Physical Medicine and Rehabilitation. Evidence-based guideline: treatment of painful diabetic neuropathy: report of the American Academy of Neurology, the American Association of Neuromuscular and Electrodiagnostic Medicine, and the American Academy of Physical Medicine and Rehabilitation. Neurology 2011;76:1758–1765.
7.
Burns TM, Graham CD, Rose MR, Simmons Z. Quality of life and measures of quality of life in patients with neuromuscular diseases. Muscle Nerve 2012;46:9–25.
8.
Trikkalinou A, Papazafiropoulou AK, Melidonis A. Type 2 diabetes and quality of life. World J Diabetes 2017;8:120–129.
9.
Gwathmey KG, Conaway MR, Sadjadi R, et al. Construction and validation of the chronic acquired polyneuropathy patient-reported index (CAP-PRI): a disease-specific, health-related quality of life instrument. Muscle Nerve 2016;54:9–17.
10.
Devine EB, Hakim Z, Green J. A systematic review of patient-reported outcome instruments measuring sleep dysfunction in adults. Pharmacoeconomics 2005;23:889–912.
11.
Burns TM. The best of both worlds: using patient-reported plus physician-scored measures during the evaluation of myasthenia gravis. Muscle Nerve 2016;53:3–4.
12.
Zilliox LA, Ruby SK, Singh S, Zhan M, Russell JW. Clinical neuropathy scales in neuropathy associated with impaired glucose tolerance. J Diabetes Complications 2015;29:372–377.
13.
Sherman RE, Anderson SA, Dal Pan GJ, et al. Real-world evidence: what is it and what can it tell us? N Engl J Med 2016;375:2293–2297.

Information & Authors

Information

Published In

Neurology®
Volume 90Number 23June 5, 2018
Pages: e2034-e2041
PubMed: 29728528

Publication History

Received: December 22, 2017
Accepted: March 20, 2018
Published online: May 4, 2018
Published in print: June 5, 2018

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Disclosure

K. Gwathmey, R. Sadjadi, and W. Horton report no disclosures relevant to the manuscript. M. Conaway reports consulting support from CSL Behring. C. Barnett-Tapia has received compensation from CSL Behring for speaking engagements and from UBC from consulting. She has received research support from Octapharma for clinician-initiated research and a new initiatives grant from the Division of Neurology, University of Toronto. V. Bril reports scientific advisory board support from CSL Behring, Baxalta, Grifols, Argenx, Octapharma, Alpha Technologies, Powell Mansfield Inc.; funding for travel or speaker honoraria from CSL Behring; PLoS One editorial board; consultancy support from CSL Behring, Grifols, BioNevia, Octapharma, Powell Mansfield Inc., Argenx, Alpha Technologies, Baxalta; research support, commercial entities, from CSL Behring, Grifols, BioNevia, Octapharma, Baxalta, Argenx; research support, foundations and societies, from Toronto General/Toronto Western Hospital Foundation GBS/CIDP Foundation International. J. Russell is supported in part by the National Institute of Diabetes and Digestive and Kidney Diseases, NIH 1R01DK107007-01A1, the Office of Research Development, Department of Veterans Affairs (Biomedical and Laboratory Research Service and Rehabilitation Research and Development, 101RX001030), and the Diabetes Action Research and Education Foundation. He reports grant support from NIH NIDDK 1R01DK107007-01A, Department of Veterans Affairs Rehabilitation Research & Development Service, and Biomedical and Laboratory Research Service, grant award to the University of Maryland from Impeto Medical, and a grant to the University of Maryland from the Diabetes Action Research and Education Foundation. A. Shaibani reports no disclosures relevant to the manuscript. M. Mauermann reports having received honoraria from the AANEM and AAN for lectures, honoraria from Continuum journal for manuscript, scientific advisory board for IONIS Pharmaceuticals for TTR amyloid clinical trial, royalties from Autonomic Disorders book published by Oxford, travel and honoraria from BMT InfoNet for lecture. She is section editor for Mayo Clinic Proceedings. M. Hehir reports consulting for Octapharma and CSL Behring. He is receiving a clinician scientist scholarship from the American Brain Foundation/AAN and Myasthenia Gravis Foundation of America. N. Kolb reports serving on an advisory board for Octapharma, and has received a grant from the Lake Champlain Cancer Research Organization Inc. J. Guptill has received personal compensation for consulting and serving on a scientific advisory board, DSMB, speaking engagement, or other activities with Alexion, Argenx, Becton Dickinson, and Grifols. Dr. Guptill has received research support from Grifols Foundation, Bioverativ, Myasthenia Gravis Foundation of America, the Alzheimer's Association, and NIH (K23NS085049). L. Hobson-Webb reports receiving support from Genzyme, a Sanofi Company; research funding for investigator initiated study in Pompe disease; one time speaker honorarium for neurologic complication of lysosomal storage disorders; Aerpio Therapeutics, Inc.: spouse employment and stock options; CSL Behring: research support as site investigator for PATH study; National Institute of Aging Claude D. Pepper Older Americans Independence Center 1 K23 AG23621-01A1. K. Gable and S. Raja report no disclosures relevant to the manuscript. N. Silvestri reports having received personal compensation from Alexion Pharmaceuticals for consulting and speaking, Strongbridge Pharmaceuticals for speaking, OptionCare for consulting, and CSL Behring for consulting. Dr. Silvestri is also on the editorial board for the Journal of Clinical Neuromuscular Disorders. G. Wolfe reports receiving personal compensation for consulting from Alexion Pharmaceuticals, Grifols, Shire; consulting compensation from Grifols, Syntimmune, Argenx, Marathon; and research funding from Alexion, Argenx, Ra, CSL Behring, NINDS/NIH, and the MGFA. A. Smith and R. Malik report no disclosures relevant to the manuscript. R. Traub reports commercial research support from Vertex Pharmaceuticals. A. Joshi, M. Elliott, and S. Jones report no disclosures relevant to the manuscript. T. Burns has received personal compensation for consulting from CSL Behring, GLG, and Clearview Health. He received travel and lodging support for an advisory board meeting from Alexion Pharmaceuticals. He is the Deputy Editor of the Neurology® Podcast. Go to Neurology.org/N for full disclosures.

Study Funding

No targeted funding reported.

Authors

Affiliations & Disclosures

Kelly G. Gwathmey, MD
From the Departments of Neurology (K.G.G., A.J., M.P.E., S.J., T.M.B.), Internal Medicine (W.B.H.), and Public Health Sciences (M.R.C.), University of Virginia, Charlottesville; Massachusetts General Hospital/Harvard Medical School (R.S.), Boston, MA; Division of Neurology (C.B.-T., V.B.), Department of Medicine, The Ellen and Martin Prosserman Centre for Neuromuscular Diseases, University of Toronto and University Health Network, Toronto, Canada; Department of Neurology (J.W.R.), University of Maryland, Baltimore; Department of Neurology (A.S.), Baylor St. Luke's Medical Center, Houston, TX; Department of Neurology (M.L.M.), Mayo Clinic, Rochester, MN; Department of Neurology (M.K.H., N.K.), University of Vermont, Burlington; Department of Neurology (J.G., L.H.-W., K.G., S.R.), Duke University Medical Center, Durham, NC; Department of Neurology (N.S., G.I.W.), University at Buffalo, SUNY, Buffalo, NY; Department of Neurology (A.G.S.), Virginia Commonwealth University, Richmond; Department of Neurology (R.M.), Rush University Medical Center, Chicago, IL; and Department of Neurology (R.T.), University of North Carolina, Chapel Hill.
Disclosure
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
Reza Sadjadi, MD
From the Departments of Neurology (K.G.G., A.J., M.P.E., S.J., T.M.B.), Internal Medicine (W.B.H.), and Public Health Sciences (M.R.C.), University of Virginia, Charlottesville; Massachusetts General Hospital/Harvard Medical School (R.S.), Boston, MA; Division of Neurology (C.B.-T., V.B.), Department of Medicine, The Ellen and Martin Prosserman Centre for Neuromuscular Diseases, University of Toronto and University Health Network, Toronto, Canada; Department of Neurology (J.W.R.), University of Maryland, Baltimore; Department of Neurology (A.S.), Baylor St. Luke's Medical Center, Houston, TX; Department of Neurology (M.L.M.), Mayo Clinic, Rochester, MN; Department of Neurology (M.K.H., N.K.), University of Vermont, Burlington; Department of Neurology (J.G., L.H.-W., K.G., S.R.), Duke University Medical Center, Durham, NC; Department of Neurology (N.S., G.I.W.), University at Buffalo, SUNY, Buffalo, NY; Department of Neurology (A.G.S.), Virginia Commonwealth University, Richmond; Department of Neurology (R.M.), Rush University Medical Center, Chicago, IL; and Department of Neurology (R.T.), University of North Carolina, Chapel Hill.
Disclosure
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
William B. Horton, MD
From the Departments of Neurology (K.G.G., A.J., M.P.E., S.J., T.M.B.), Internal Medicine (W.B.H.), and Public Health Sciences (M.R.C.), University of Virginia, Charlottesville; Massachusetts General Hospital/Harvard Medical School (R.S.), Boston, MA; Division of Neurology (C.B.-T., V.B.), Department of Medicine, The Ellen and Martin Prosserman Centre for Neuromuscular Diseases, University of Toronto and University Health Network, Toronto, Canada; Department of Neurology (J.W.R.), University of Maryland, Baltimore; Department of Neurology (A.S.), Baylor St. Luke's Medical Center, Houston, TX; Department of Neurology (M.L.M.), Mayo Clinic, Rochester, MN; Department of Neurology (M.K.H., N.K.), University of Vermont, Burlington; Department of Neurology (J.G., L.H.-W., K.G., S.R.), Duke University Medical Center, Durham, NC; Department of Neurology (N.S., G.I.W.), University at Buffalo, SUNY, Buffalo, NY; Department of Neurology (A.G.S.), Virginia Commonwealth University, Richmond; Department of Neurology (R.M.), Rush University Medical Center, Chicago, IL; and Department of Neurology (R.T.), University of North Carolina, Chapel Hill.
Disclosure
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
Mark R. Conaway, PhD
From the Departments of Neurology (K.G.G., A.J., M.P.E., S.J., T.M.B.), Internal Medicine (W.B.H.), and Public Health Sciences (M.R.C.), University of Virginia, Charlottesville; Massachusetts General Hospital/Harvard Medical School (R.S.), Boston, MA; Division of Neurology (C.B.-T., V.B.), Department of Medicine, The Ellen and Martin Prosserman Centre for Neuromuscular Diseases, University of Toronto and University Health Network, Toronto, Canada; Department of Neurology (J.W.R.), University of Maryland, Baltimore; Department of Neurology (A.S.), Baylor St. Luke's Medical Center, Houston, TX; Department of Neurology (M.L.M.), Mayo Clinic, Rochester, MN; Department of Neurology (M.K.H., N.K.), University of Vermont, Burlington; Department of Neurology (J.G., L.H.-W., K.G., S.R.), Duke University Medical Center, Durham, NC; Department of Neurology (N.S., G.I.W.), University at Buffalo, SUNY, Buffalo, NY; Department of Neurology (A.G.S.), Virginia Commonwealth University, Richmond; Department of Neurology (R.M.), Rush University Medical Center, Chicago, IL; and Department of Neurology (R.T.), University of North Carolina, Chapel Hill.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
Developmental Medicine and Child Neurology, 2007-present
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.
MGFA, investigator, 2008
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
Carolina Barnett-Tapia, MD
From the Departments of Neurology (K.G.G., A.J., M.P.E., S.J., T.M.B.), Internal Medicine (W.B.H.), and Public Health Sciences (M.R.C.), University of Virginia, Charlottesville; Massachusetts General Hospital/Harvard Medical School (R.S.), Boston, MA; Division of Neurology (C.B.-T., V.B.), Department of Medicine, The Ellen and Martin Prosserman Centre for Neuromuscular Diseases, University of Toronto and University Health Network, Toronto, Canada; Department of Neurology (J.W.R.), University of Maryland, Baltimore; Department of Neurology (A.S.), Baylor St. Luke's Medical Center, Houston, TX; Department of Neurology (M.L.M.), Mayo Clinic, Rochester, MN; Department of Neurology (M.K.H., N.K.), University of Vermont, Burlington; Department of Neurology (J.G., L.H.-W., K.G., S.R.), Duke University Medical Center, Durham, NC; Department of Neurology (N.S., G.I.W.), University at Buffalo, SUNY, Buffalo, NY; Department of Neurology (A.G.S.), Virginia Commonwealth University, Richmond; Department of Neurology (R.M.), Rush University Medical Center, Chicago, IL; and Department of Neurology (R.T.), University of North Carolina, Chapel Hill.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
speaker honoraria, CSL
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
(1) UCB
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
(1) Research grant from Octapharma, for clinician-initiated research
Research Support, Government Entities:
1.
NONE
Research Support, Academic Entities:
1.
(1) New initiatives grant. University of Toronto, Division of Neurology
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.
(1) May receive future royalties for licensing of the MGII
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
Vera Bril, MD
From the Departments of Neurology (K.G.G., A.J., M.P.E., S.J., T.M.B.), Internal Medicine (W.B.H.), and Public Health Sciences (M.R.C.), University of Virginia, Charlottesville; Massachusetts General Hospital/Harvard Medical School (R.S.), Boston, MA; Division of Neurology (C.B.-T., V.B.), Department of Medicine, The Ellen and Martin Prosserman Centre for Neuromuscular Diseases, University of Toronto and University Health Network, Toronto, Canada; Department of Neurology (J.W.R.), University of Maryland, Baltimore; Department of Neurology (A.S.), Baylor St. Luke's Medical Center, Houston, TX; Department of Neurology (M.L.M.), Mayo Clinic, Rochester, MN; Department of Neurology (M.K.H., N.K.), University of Vermont, Burlington; Department of Neurology (J.G., L.H.-W., K.G., S.R.), Duke University Medical Center, Durham, NC; Department of Neurology (N.S., G.I.W.), University at Buffalo, SUNY, Buffalo, NY; Department of Neurology (A.G.S.), Virginia Commonwealth University, Richmond; Department of Neurology (R.M.), Rush University Medical Center, Chicago, IL; and Department of Neurology (R.T.), University of North Carolina, Chapel Hill.
Disclosure
Scientific Advisory Boards:
1.
(2) CSL Behring (2) Baxalta (2) Grifols (2) Argenyx (2) Octapharma (2) Alpha Technologies (3) Powell Mansfield Inc
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
(2) CSL Behring
Editorial Boards:
1.
PLoS One, editorial board member starting 2016
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
(2) CSL Behring, Grifols, Bionevia, Octapharma, Powell Mansfield Inc, Argenyx, Alpha Technologies, Baxalta
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
(2) CSL Behring, Grifols, Bionevia, Octapharma, Baxalta, ArgenX
Research Support, Government Entities:
1.
NONE
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
Toronto General/Toronto Western Hospital Foundation GBS/CIDP Foundation International
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
James W. Russell, MBChB, MS, FRCP
From the Departments of Neurology (K.G.G., A.J., M.P.E., S.J., T.M.B.), Internal Medicine (W.B.H.), and Public Health Sciences (M.R.C.), University of Virginia, Charlottesville; Massachusetts General Hospital/Harvard Medical School (R.S.), Boston, MA; Division of Neurology (C.B.-T., V.B.), Department of Medicine, The Ellen and Martin Prosserman Centre for Neuromuscular Diseases, University of Toronto and University Health Network, Toronto, Canada; Department of Neurology (J.W.R.), University of Maryland, Baltimore; Department of Neurology (A.S.), Baylor St. Luke's Medical Center, Houston, TX; Department of Neurology (M.L.M.), Mayo Clinic, Rochester, MN; Department of Neurology (M.K.H., N.K.), University of Vermont, Burlington; Department of Neurology (J.G., L.H.-W., K.G., S.R.), Duke University Medical Center, Durham, NC; Department of Neurology (N.S., G.I.W.), University at Buffalo, SUNY, Buffalo, NY; Department of Neurology (A.G.S.), Virginia Commonwealth University, Richmond; Department of Neurology (R.M.), Rush University Medical Center, Chicago, IL; and Department of Neurology (R.T.), University of North Carolina, Chapel Hill.
Disclosure
Scientific Advisory Boards:
1.
Commercial entity: Celgene DPN clinical trial (PDA-002). Scientific advisory board for experimental trial for diabetic neuropathy that is now ended. Non Commercial entity: ACTTION CONCEPPT advisory program to develop outcome measures in diabetic neuropathy.
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
Speaker Endocrine Society Meeting 2016 Speaker Griffols IVIG in CIDP/diabetes meeting 2016
Editorial Boards:
1.
NONE
Patents:
1.
Copyright applied for the SAS survey by the university of maryland, veterans administration
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.
Sudoscan Impeto Medical PI 2012 - 2017.
Research Support, Government Entities:
1.
NIDDK 1R01DK107007-01A1 PI 2016 - present Veterans Administration Merit awards 101RX001030 PI, 2013-present ORD Shared Equipment Evaluation Program (ShEEP), PI, 2017 - present Veterans Administration CDA2: Primary Mentor 2016 - present NIH NINDS 1K08NS102468 - 01A1: Primary Mentor, 2018 - present T32 NIDDK: Co-Investigator, 2015 - present
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
Aziz Shaibani, MD
From the Departments of Neurology (K.G.G., A.J., M.P.E., S.J., T.M.B.), Internal Medicine (W.B.H.), and Public Health Sciences (M.R.C.), University of Virginia, Charlottesville; Massachusetts General Hospital/Harvard Medical School (R.S.), Boston, MA; Division of Neurology (C.B.-T., V.B.), Department of Medicine, The Ellen and Martin Prosserman Centre for Neuromuscular Diseases, University of Toronto and University Health Network, Toronto, Canada; Department of Neurology (J.W.R.), University of Maryland, Baltimore; Department of Neurology (A.S.), Baylor St. Luke's Medical Center, Houston, TX; Department of Neurology (M.L.M.), Mayo Clinic, Rochester, MN; Department of Neurology (M.K.H., N.K.), University of Vermont, Burlington; Department of Neurology (J.G., L.H.-W., K.G., S.R.), Duke University Medical Center, Durham, NC; Department of Neurology (N.S., G.I.W.), University at Buffalo, SUNY, Buffalo, NY; Department of Neurology (A.G.S.), Virginia Commonwealth University, Richmond; Department of Neurology (R.M.), Rush University Medical Center, Chicago, IL; and Department of Neurology (R.T.), University of North Carolina, Chapel Hill.
Disclosure
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.
Oxford university press. Video Atlas of neuromuscular disorders
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
Michelle L. Mauermann, MD
From the Departments of Neurology (K.G.G., A.J., M.P.E., S.J., T.M.B.), Internal Medicine (W.B.H.), and Public Health Sciences (M.R.C.), University of Virginia, Charlottesville; Massachusetts General Hospital/Harvard Medical School (R.S.), Boston, MA; Division of Neurology (C.B.-T., V.B.), Department of Medicine, The Ellen and Martin Prosserman Centre for Neuromuscular Diseases, University of Toronto and University Health Network, Toronto, Canada; Department of Neurology (J.W.R.), University of Maryland, Baltimore; Department of Neurology (A.S.), Baylor St. Luke's Medical Center, Houston, TX; Department of Neurology (M.L.M.), Mayo Clinic, Rochester, MN; Department of Neurology (M.K.H., N.K.), University of Vermont, Burlington; Department of Neurology (J.G., L.H.-W., K.G., S.R.), Duke University Medical Center, Durham, NC; Department of Neurology (N.S., G.I.W.), University at Buffalo, SUNY, Buffalo, NY; Department of Neurology (A.G.S.), Virginia Commonwealth University, Richmond; Department of Neurology (R.M.), Rush University Medical Center, Chicago, IL; and Department of Neurology (R.T.), University of North Carolina, Chapel Hill.
Disclosure
Scientific Advisory Boards:
1.
IONIS Pharmaceuticals Scientific Advisory Board
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
Mayo Clinic Proceedings, Section Editor, 2016 and onwards
Patents:
1.
NONE
Publishing Royalties:
1.
Autonomic Neurology, Oxford, 2015-2016
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.
Ionis Pharmaceuticals, Inc. Alnylam Pharmaceuticals
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
Michael K. Hehir, MD
From the Departments of Neurology (K.G.G., A.J., M.P.E., S.J., T.M.B.), Internal Medicine (W.B.H.), and Public Health Sciences (M.R.C.), University of Virginia, Charlottesville; Massachusetts General Hospital/Harvard Medical School (R.S.), Boston, MA; Division of Neurology (C.B.-T., V.B.), Department of Medicine, The Ellen and Martin Prosserman Centre for Neuromuscular Diseases, University of Toronto and University Health Network, Toronto, Canada; Department of Neurology (J.W.R.), University of Maryland, Baltimore; Department of Neurology (A.S.), Baylor St. Luke's Medical Center, Houston, TX; Department of Neurology (M.L.M.), Mayo Clinic, Rochester, MN; Department of Neurology (M.K.H., N.K.), University of Vermont, Burlington; Department of Neurology (J.G., L.H.-W., K.G., S.R.), Duke University Medical Center, Durham, NC; Department of Neurology (N.S., G.I.W.), University at Buffalo, SUNY, Buffalo, NY; Department of Neurology (A.G.S.), Virginia Commonwealth University, Richmond; Department of Neurology (R.M.), Rush University Medical Center, Chicago, IL; and Department of Neurology (R.T.), University of North Carolina, Chapel Hill.
Disclosure
Scientific Advisory Boards:
1.
1. Octapharma Scientific Advisory Board 2017 2. CSL Behring Scientific Advisory Board 2017 3. Alexion Scientific Advisory Board 2018
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.
American Academy of Neurology, American Brain Foundation, Myasthenia Gravis Foundation of America Clinician Scientist Development Award
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
Noah Kolb, MD
From the Departments of Neurology (K.G.G., A.J., M.P.E., S.J., T.M.B.), Internal Medicine (W.B.H.), and Public Health Sciences (M.R.C.), University of Virginia, Charlottesville; Massachusetts General Hospital/Harvard Medical School (R.S.), Boston, MA; Division of Neurology (C.B.-T., V.B.), Department of Medicine, The Ellen and Martin Prosserman Centre for Neuromuscular Diseases, University of Toronto and University Health Network, Toronto, Canada; Department of Neurology (J.W.R.), University of Maryland, Baltimore; Department of Neurology (A.S.), Baylor St. Luke's Medical Center, Houston, TX; Department of Neurology (M.L.M.), Mayo Clinic, Rochester, MN; Department of Neurology (M.K.H., N.K.), University of Vermont, Burlington; Department of Neurology (J.G., L.H.-W., K.G., S.R.), Duke University Medical Center, Durham, NC; Department of Neurology (N.S., G.I.W.), University at Buffalo, SUNY, Buffalo, NY; Department of Neurology (A.G.S.), Virginia Commonwealth University, Richmond; Department of Neurology (R.M.), Rush University Medical Center, Chicago, IL; and Department of Neurology (R.T.), University of North Carolina, Chapel Hill.
Disclosure
Scientific Advisory Boards:
1.
1. Octapharma, One time scientific advisory board. $4100
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
1. Walgreens, speakers honorarium, $1500, unrelated to study
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. NIH KL2, #1KL2TR001065, PI, 2014-2016
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
Lake Champlain Cancer Research Organization, PI 2017-2018
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
Jeffrey Guptill, MD
From the Departments of Neurology (K.G.G., A.J., M.P.E., S.J., T.M.B.), Internal Medicine (W.B.H.), and Public Health Sciences (M.R.C.), University of Virginia, Charlottesville; Massachusetts General Hospital/Harvard Medical School (R.S.), Boston, MA; Division of Neurology (C.B.-T., V.B.), Department of Medicine, The Ellen and Martin Prosserman Centre for Neuromuscular Diseases, University of Toronto and University Health Network, Toronto, Canada; Department of Neurology (J.W.R.), University of Maryland, Baltimore; Department of Neurology (A.S.), Baylor St. Luke's Medical Center, Houston, TX; Department of Neurology (M.L.M.), Mayo Clinic, Rochester, MN; Department of Neurology (M.K.H., N.K.), University of Vermont, Burlington; Department of Neurology (J.G., L.H.-W., K.G., S.R.), Duke University Medical Center, Durham, NC; Department of Neurology (N.S., G.I.W.), University at Buffalo, SUNY, Buffalo, NY; Department of Neurology (A.G.S.), Virginia Commonwealth University, Richmond; Department of Neurology (R.M.), Rush University Medical Center, Chicago, IL; and Department of Neurology (R.T.), University of North Carolina, Chapel Hill.
Disclosure
Scientific Advisory Boards:
1.
UCB Biosciences, Argen-X, Alexion, Momenta
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
Alexion
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
UCB Biosciences, Jacobus Pharmaceutical Company Inc, Momenta, Kashiv
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
Mentor for Fellowship in Neurology Clinical Drug Developement sponsored by UCB Biosciences, UNC School of Pharmacy, Duke University Medical Center, and the Hamner Institutes.
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
Ra Pharmaceuticals, Bioverativ
Research Support, Government Entities:
1.
NIH/NINDS, 1K23NS085049, PI. NIH/NINDS, HHSN27100001, PI
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
1) Jose Antonio Grifols Lucas Foundation, Myasthenia Gravis Foundation of America
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
Lisa Hobson-Webb, MD
From the Departments of Neurology (K.G.G., A.J., M.P.E., S.J., T.M.B.), Internal Medicine (W.B.H.), and Public Health Sciences (M.R.C.), University of Virginia, Charlottesville; Massachusetts General Hospital/Harvard Medical School (R.S.), Boston, MA; Division of Neurology (C.B.-T., V.B.), Department of Medicine, The Ellen and Martin Prosserman Centre for Neuromuscular Diseases, University of Toronto and University Health Network, Toronto, Canada; Department of Neurology (J.W.R.), University of Maryland, Baltimore; Department of Neurology (A.S.), Baylor St. Luke's Medical Center, Houston, TX; Department of Neurology (M.L.M.), Mayo Clinic, Rochester, MN; Department of Neurology (M.K.H., N.K.), University of Vermont, Burlington; Department of Neurology (J.G., L.H.-W., K.G., S.R.), Duke University Medical Center, Durham, NC; Department of Neurology (N.S., G.I.W.), University at Buffalo, SUNY, Buffalo, NY; Department of Neurology (A.G.S.), Virginia Commonwealth University, Richmond; Department of Neurology (R.M.), Rush University Medical Center, Chicago, IL; and Department of Neurology (R.T.), University of North Carolina, Chapel Hill.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
1. Honoraria for speaking at the AANEM Annual Meeting 2016 and 2017. 2. Received honorarium from Genzyme, a Sanofi Company for a lecture on neurologic manifestations of lysomsomal storage disorders at the Southeast Regional Genetics Meeting in 2017.
Editorial Boards:
1.
1. Editorial board member for Clinical Neurophysiology 2014-present. There is no compensation for this position. 2. Associate Editor for Muscle & Nerve. 3. Editorial board member for Ultrasound in Medicine and Biology.
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. Salary support from Genzyme for Pompe disease trial. 2. Research support from CSL Behring as site investigator for the PATH trial of subcutaneous immunoglobulin in CIDP. 3. Salary support from Valerion Therapeutics for ultrasound studies in glycogen storage disease type III.
Research Support, Government Entities:
1.
1. National Institute of Aging 1 K23 AG23621-01A1; Site investigator for study with Duke Pepper Center 2016-2018
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
NONE
Stock/stock Options/board of Directors Compensation:
1.
1. Spouse is employed by and has stock options in Aerpio Therapeutics, biotechnology company that develops drugs for diabetic macular edema and irritable bowel syndrome. 2. Spouse formerly employed by and holds stock in Tenax Therapeutics, which develops therapies for low cardiac output syndrome. 3. Spouse holds stock in Akebia, which develops pharmacotherapy for chronic kidney disease.
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
Karissa Gable, MD
From the Departments of Neurology (K.G.G., A.J., M.P.E., S.J., T.M.B.), Internal Medicine (W.B.H.), and Public Health Sciences (M.R.C.), University of Virginia, Charlottesville; Massachusetts General Hospital/Harvard Medical School (R.S.), Boston, MA; Division of Neurology (C.B.-T., V.B.), Department of Medicine, The Ellen and Martin Prosserman Centre for Neuromuscular Diseases, University of Toronto and University Health Network, Toronto, Canada; Department of Neurology (J.W.R.), University of Maryland, Baltimore; Department of Neurology (A.S.), Baylor St. Luke's Medical Center, Houston, TX; Department of Neurology (M.L.M.), Mayo Clinic, Rochester, MN; Department of Neurology (M.K.H., N.K.), University of Vermont, Burlington; Department of Neurology (J.G., L.H.-W., K.G., S.R.), Duke University Medical Center, Durham, NC; Department of Neurology (N.S., G.I.W.), University at Buffalo, SUNY, Buffalo, NY; Department of Neurology (A.G.S.), Virginia Commonwealth University, Richmond; Department of Neurology (R.M.), Rush University Medical Center, Chicago, IL; and Department of Neurology (R.T.), University of North Carolina, Chapel Hill.
Disclosure
Scientific Advisory Boards:
1.
CSL Behring
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
Shruti Raja, MD
From the Departments of Neurology (K.G.G., A.J., M.P.E., S.J., T.M.B.), Internal Medicine (W.B.H.), and Public Health Sciences (M.R.C.), University of Virginia, Charlottesville; Massachusetts General Hospital/Harvard Medical School (R.S.), Boston, MA; Division of Neurology (C.B.-T., V.B.), Department of Medicine, The Ellen and Martin Prosserman Centre for Neuromuscular Diseases, University of Toronto and University Health Network, Toronto, Canada; Department of Neurology (J.W.R.), University of Maryland, Baltimore; Department of Neurology (A.S.), Baylor St. Luke's Medical Center, Houston, TX; Department of Neurology (M.L.M.), Mayo Clinic, Rochester, MN; Department of Neurology (M.K.H., N.K.), University of Vermont, Burlington; Department of Neurology (J.G., L.H.-W., K.G., S.R.), Duke University Medical Center, Durham, NC; Department of Neurology (N.S., G.I.W.), University at Buffalo, SUNY, Buffalo, NY; Department of Neurology (A.G.S.), Virginia Commonwealth University, Richmond; Department of Neurology (R.M.), Rush University Medical Center, Chicago, IL; and Department of Neurology (R.T.), University of North Carolina, Chapel Hill.
Disclosure
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
Nicholas Silvestri, MD
From the Departments of Neurology (K.G.G., A.J., M.P.E., S.J., T.M.B.), Internal Medicine (W.B.H.), and Public Health Sciences (M.R.C.), University of Virginia, Charlottesville; Massachusetts General Hospital/Harvard Medical School (R.S.), Boston, MA; Division of Neurology (C.B.-T., V.B.), Department of Medicine, The Ellen and Martin Prosserman Centre for Neuromuscular Diseases, University of Toronto and University Health Network, Toronto, Canada; Department of Neurology (J.W.R.), University of Maryland, Baltimore; Department of Neurology (A.S.), Baylor St. Luke's Medical Center, Houston, TX; Department of Neurology (M.L.M.), Mayo Clinic, Rochester, MN; Department of Neurology (M.K.H., N.K.), University of Vermont, Burlington; Department of Neurology (J.G., L.H.-W., K.G., S.R.), Duke University Medical Center, Durham, NC; Department of Neurology (N.S., G.I.W.), University at Buffalo, SUNY, Buffalo, NY; Department of Neurology (A.G.S.), Virginia Commonwealth University, Richmond; Department of Neurology (R.M.), Rush University Medical Center, Chicago, IL; and Department of Neurology (R.T.), University of North Carolina, Chapel Hill.
Disclosure
Scientific Advisory Boards:
1.
Scientific advisory board for OptionCare, consultant for Alexion
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
Journal of Clinical Neuromuscular Disease, editorial board
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
Consultant for Alexion.
Speakers' Bureaus:
1.
Alexion, Strongbridge
Other Activities:
1.
I have served on 2 advisory boards for CSL Behring
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
Gil I. Wolfe, MD
From the Departments of Neurology (K.G.G., A.J., M.P.E., S.J., T.M.B.), Internal Medicine (W.B.H.), and Public Health Sciences (M.R.C.), University of Virginia, Charlottesville; Massachusetts General Hospital/Harvard Medical School (R.S.), Boston, MA; Division of Neurology (C.B.-T., V.B.), Department of Medicine, The Ellen and Martin Prosserman Centre for Neuromuscular Diseases, University of Toronto and University Health Network, Toronto, Canada; Department of Neurology (J.W.R.), University of Maryland, Baltimore; Department of Neurology (A.S.), Baylor St. Luke's Medical Center, Houston, TX; Department of Neurology (M.L.M.), Mayo Clinic, Rochester, MN; Department of Neurology (M.K.H., N.K.), University of Vermont, Burlington; Department of Neurology (J.G., L.H.-W., K.G., S.R.), Duke University Medical Center, Durham, NC; Department of Neurology (N.S., G.I.W.), University at Buffalo, SUNY, Buffalo, NY; Department of Neurology (A.G.S.), Virginia Commonwealth University, Richmond; Department of Neurology (R.M.), Rush University Medical Center, Chicago, IL; and Department of Neurology (R.T.), University of North Carolina, Chapel Hill.
Disclosure
Scientific Advisory Boards:
1.
(1)Grifols scientific advisory board
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
(1) Grifols speaker honoraria
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers' Bureaus:
1.
(1) Grifols
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
PCORI--#1306-02496, Patient Assisted Intervention for Neuropathy: Comparison of Treatment in Real Life Situations-PAIN CONTRoLS (Site Principal Investigator, PI R. Barohn). 10/1/15-9/30/18, Per patient reimbursement $2485.
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
A. Gordon Smith, MD
From the Departments of Neurology (K.G.G., A.J., M.P.E., S.J., T.M.B.), Internal Medicine (W.B.H.), and Public Health Sciences (M.R.C.), University of Virginia, Charlottesville; Massachusetts General Hospital/Harvard Medical School (R.S.), Boston, MA; Division of Neurology (C.B.-T., V.B.), Department of Medicine, The Ellen and Martin Prosserman Centre for Neuromuscular Diseases, University of Toronto and University Health Network, Toronto, Canada; Department of Neurology (J.W.R.), University of Maryland, Baltimore; Department of Neurology (A.S.), Baylor St. Luke's Medical Center, Houston, TX; Department of Neurology (M.L.M.), Mayo Clinic, Rochester, MN; Department of Neurology (M.K.H., N.K.), University of Vermont, Burlington; Department of Neurology (J.G., L.H.-W., K.G., S.R.), Duke University Medical Center, Durham, NC; Department of Neurology (N.S., G.I.W.), University at Buffalo, SUNY, Buffalo, NY; Department of Neurology (A.G.S.), Virginia Commonwealth University, Richmond; Department of Neurology (R.M.), Rush University Medical Center, Chicago, IL; and Department of Neurology (R.T.), University of North Carolina, Chapel Hill.
Disclosure
Scientific Advisory Boards:
1.
Celegene Data Monitoring Committee
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
Editor for NeuroLearn
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
(1) Regenesis (2) Allergan (3) Viromed
Speakers' Bureaus:
1.
(1) Alexion
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
(1) Impeto Medical SAS
Research Support, Government Entities:
1.
(1) DK064814 PI 2004-2014 NIDDK (2) U10NS077305 PI 2011-2018 NINDS (3) U10NS086606 CoI 2013-2018 NINDS
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
Rabia Malik, MD
From the Departments of Neurology (K.G.G., A.J., M.P.E., S.J., T.M.B.), Internal Medicine (W.B.H.), and Public Health Sciences (M.R.C.), University of Virginia, Charlottesville; Massachusetts General Hospital/Harvard Medical School (R.S.), Boston, MA; Division of Neurology (C.B.-T., V.B.), Department of Medicine, The Ellen and Martin Prosserman Centre for Neuromuscular Diseases, University of Toronto and University Health Network, Toronto, Canada; Department of Neurology (J.W.R.), University of Maryland, Baltimore; Department of Neurology (A.S.), Baylor St. Luke's Medical Center, Houston, TX; Department of Neurology (M.L.M.), Mayo Clinic, Rochester, MN; Department of Neurology (M.K.H., N.K.), University of Vermont, Burlington; Department of Neurology (J.G., L.H.-W., K.G., S.R.), Duke University Medical Center, Durham, NC; Department of Neurology (N.S., G.I.W.), University at Buffalo, SUNY, Buffalo, NY; Department of Neurology (A.G.S.), Virginia Commonwealth University, Richmond; Department of Neurology (R.M.), Rush University Medical Center, Chicago, IL; and Department of Neurology (R.T.), University of North Carolina, Chapel Hill.
Disclosure
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
Rebecca Traub, MD
From the Departments of Neurology (K.G.G., A.J., M.P.E., S.J., T.M.B.), Internal Medicine (W.B.H.), and Public Health Sciences (M.R.C.), University of Virginia, Charlottesville; Massachusetts General Hospital/Harvard Medical School (R.S.), Boston, MA; Division of Neurology (C.B.-T., V.B.), Department of Medicine, The Ellen and Martin Prosserman Centre for Neuromuscular Diseases, University of Toronto and University Health Network, Toronto, Canada; Department of Neurology (J.W.R.), University of Maryland, Baltimore; Department of Neurology (A.S.), Baylor St. Luke's Medical Center, Houston, TX; Department of Neurology (M.L.M.), Mayo Clinic, Rochester, MN; Department of Neurology (M.K.H., N.K.), University of Vermont, Burlington; Department of Neurology (J.G., L.H.-W., K.G., S.R.), Duke University Medical Center, Durham, NC; Department of Neurology (N.S., G.I.W.), University at Buffalo, SUNY, Buffalo, NY; Department of Neurology (A.G.S.), Virginia Commonwealth University, Richmond; Department of Neurology (R.M.), Rush University Medical Center, Chicago, IL; and Department of Neurology (R.T.), University of North Carolina, Chapel Hill.
Disclosure
Scientific Advisory Boards:
1.
Ionis pharmaceuticals - advisory board meeting CSL Behring - advisory board meeting
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.
Site PI for two industry sponsored clinical trials: Vertex pharmaceuticals - A Study to Evaluate the Efficacy and Safety of VX-150 in Treating Subjects With Pain Caused by Small Fiber Neuropathy Ionis pharmaceuticals - ATTR Expanded Access Program (EAP) by Ionis
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
Amruta Joshi, MS
From the Departments of Neurology (K.G.G., A.J., M.P.E., S.J., T.M.B.), Internal Medicine (W.B.H.), and Public Health Sciences (M.R.C.), University of Virginia, Charlottesville; Massachusetts General Hospital/Harvard Medical School (R.S.), Boston, MA; Division of Neurology (C.B.-T., V.B.), Department of Medicine, The Ellen and Martin Prosserman Centre for Neuromuscular Diseases, University of Toronto and University Health Network, Toronto, Canada; Department of Neurology (J.W.R.), University of Maryland, Baltimore; Department of Neurology (A.S.), Baylor St. Luke's Medical Center, Houston, TX; Department of Neurology (M.L.M.), Mayo Clinic, Rochester, MN; Department of Neurology (M.K.H., N.K.), University of Vermont, Burlington; Department of Neurology (J.G., L.H.-W., K.G., S.R.), Duke University Medical Center, Durham, NC; Department of Neurology (N.S., G.I.W.), University at Buffalo, SUNY, Buffalo, NY; Department of Neurology (A.G.S.), Virginia Commonwealth University, Richmond; Department of Neurology (R.M.), Rush University Medical Center, Chicago, IL; and Department of Neurology (R.T.), University of North Carolina, Chapel Hill.
Disclosure
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
Matthew P. Elliott, MD
From the Departments of Neurology (K.G.G., A.J., M.P.E., S.J., T.M.B.), Internal Medicine (W.B.H.), and Public Health Sciences (M.R.C.), University of Virginia, Charlottesville; Massachusetts General Hospital/Harvard Medical School (R.S.), Boston, MA; Division of Neurology (C.B.-T., V.B.), Department of Medicine, The Ellen and Martin Prosserman Centre for Neuromuscular Diseases, University of Toronto and University Health Network, Toronto, Canada; Department of Neurology (J.W.R.), University of Maryland, Baltimore; Department of Neurology (A.S.), Baylor St. Luke's Medical Center, Houston, TX; Department of Neurology (M.L.M.), Mayo Clinic, Rochester, MN; Department of Neurology (M.K.H., N.K.), University of Vermont, Burlington; Department of Neurology (J.G., L.H.-W., K.G., S.R.), Duke University Medical Center, Durham, NC; Department of Neurology (N.S., G.I.W.), University at Buffalo, SUNY, Buffalo, NY; Department of Neurology (A.G.S.), Virginia Commonwealth University, Richmond; Department of Neurology (R.M.), Rush University Medical Center, Chicago, IL; and Department of Neurology (R.T.), University of North Carolina, Chapel Hill.
Disclosure
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
Sarah Jones, MD
From the Departments of Neurology (K.G.G., A.J., M.P.E., S.J., T.M.B.), Internal Medicine (W.B.H.), and Public Health Sciences (M.R.C.), University of Virginia, Charlottesville; Massachusetts General Hospital/Harvard Medical School (R.S.), Boston, MA; Division of Neurology (C.B.-T., V.B.), Department of Medicine, The Ellen and Martin Prosserman Centre for Neuromuscular Diseases, University of Toronto and University Health Network, Toronto, Canada; Department of Neurology (J.W.R.), University of Maryland, Baltimore; Department of Neurology (A.S.), Baylor St. Luke's Medical Center, Houston, TX; Department of Neurology (M.L.M.), Mayo Clinic, Rochester, MN; Department of Neurology (M.K.H., N.K.), University of Vermont, Burlington; Department of Neurology (J.G., L.H.-W., K.G., S.R.), Duke University Medical Center, Durham, NC; Department of Neurology (N.S., G.I.W.), University at Buffalo, SUNY, Buffalo, NY; Department of Neurology (A.G.S.), Virginia Commonwealth University, Richmond; Department of Neurology (R.M.), Rush University Medical Center, Chicago, IL; and Department of Neurology (R.T.), University of North Carolina, Chapel Hill.
Disclosure
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.
I supervise the Neurophysiology-EMG lab one half-day a week (10% effort).
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
Ted M. Burns, MD
From the Departments of Neurology (K.G.G., A.J., M.P.E., S.J., T.M.B.), Internal Medicine (W.B.H.), and Public Health Sciences (M.R.C.), University of Virginia, Charlottesville; Massachusetts General Hospital/Harvard Medical School (R.S.), Boston, MA; Division of Neurology (C.B.-T., V.B.), Department of Medicine, The Ellen and Martin Prosserman Centre for Neuromuscular Diseases, University of Toronto and University Health Network, Toronto, Canada; Department of Neurology (J.W.R.), University of Maryland, Baltimore; Department of Neurology (A.S.), Baylor St. Luke's Medical Center, Houston, TX; Department of Neurology (M.L.M.), Mayo Clinic, Rochester, MN; Department of Neurology (M.K.H., N.K.), University of Vermont, Burlington; Department of Neurology (J.G., L.H.-W., K.G., S.R.), Duke University Medical Center, Durham, NC; Department of Neurology (N.S., G.I.W.), University at Buffalo, SUNY, Buffalo, NY; Department of Neurology (A.G.S.), Virginia Commonwealth University, Richmond; Department of Neurology (R.M.), Rush University Medical Center, Chicago, IL; and Department of Neurology (R.T.), University of North Carolina, Chapel Hill.
Disclosure
Scientific Advisory Boards:
1.
Argenx, UCB, CSL Behring
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
Argenx, Alexion
Editorial Boards:
1.
Section Editor for Neurology Podcast, 2007-2017 Section Deputy Editor, Neurology Podcast, 2017-present
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
received support for consulting activities from UCB Pharma, CSL Behring, Momenta, Argenx
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

Notes

Correspondence Dr. Burns [email protected]
Go to Neurology.org/N for full disclosures. Funding information and disclosures deemed relevant by the authors, if any, are provided at the end of the article.

Author Contributions

Dr. Gwathmey: study concept and design, acquisition of data, analysis and interpretation, critical revision of the manuscript for important intellectual content. Dr. Sadjadi: analysis and interpretation, critical revision of the manuscript for important intellectual content, study concept and design, acquisition of data, analysis and interpretation, critical revision of the manuscript for important intellectual content. Dr. Horton: acquisition of data, analysis and interpretation, critical revision of the manuscript for important intellectual content. Dr. Conaway: analysis and interpretation, critical revision of the manuscript for important intellectual content. Dr. Barnett-Tapia: acquisition of data, analysis and interpretation, critical revision of the manuscript for important intellectual content. Dr. Bril: acquisition of data, critical revision of the manuscript for important intellectual content. Dr. Russell: acquisition of data, critical revision of the manuscript for important intellectual content. Dr. Shaibani: acquisition of data, critical revision of the manuscript for important intellectual content. Dr. Mauermann: acquisition of data, critical revision of the manuscript for important intellectual content. Dr. Hehir: acquisition of data, critical revision of the manuscript for important intellectual content. Dr. Kolb: acquisition of data, critical revision of the manuscript for important intellectual content. Dr. Guptill: acquisition of data, critical revision of the manuscript for important intellectual content. Dr. Hobson-Webb: acquisition of data, critical revision of the manuscript for important intellectual content. Dr. Gable: acquisition of data. Dr. Raja: acquisition of data, critical revision of the manuscript for important intellectual content. Dr. Silvestri: acquisition of data, critical revision of the manuscript for important intellectual content. Dr. Wolfe: acquisition of data, critical revision of the manuscript for important intellectual content. Dr. Smith: critical revision of the manuscript for important intellectual content. Dr. Malik: acquisition of data, critical revision of the manuscript for important intellectual content. Dr. Traub: acquisition of data, critical revision of the manuscript for important intellectual content. Amruta Joshi: acquisition of data, study supervision. Dr. Elliott: acquisition of data. Dr. Jones: acquisition of data. Dr. Burns: study concept and design, acquisition of data, analysis and interpretation, critical revision of the manuscript for important intellectual content, study supervision.

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