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May 07, 2019; 92 (19) ArticleOpen Access

Assessment and effect of a gap between new-onset epilepsy diagnosis and treatment in the US

Linda Kalilani, Edward Faught, Hyunmi Kim, Chakkarin Burudpakdee, Arpamas Seetasith, Scott Laranjo, David Friesen, Kathrin Haeffs, Victor Kiri, David J. Thurman
First published April 10, 2019, DOI: https://doi.org/10.1212/WNL.0000000000007448
Linda Kalilani
From UCB Pharma (L.K.), Raleigh, NC; Department of Neurology (E.F., D.J.T.), Emory University School of Medicine, Atlanta, GA; Department of Neurology (H.K.), Stanford University School of Medicine, Palo Alto, CA; IQVIA (C.B., A.S.), Fairfax, VA; UCB Pharma (S.L.), Smyrna, GA; UCB Pharma (D.F.), Ascot, Berkshire, UK; UCB Pharma (K.H.), Monheim am Rhein, Germany; and FV & JK Consulting Ltd. (V.K.), Guildford, Surrey, UK. S.L. is currently employed by Aerie Pharmaceuticals, Durham, NC.
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Edward Faught
From UCB Pharma (L.K.), Raleigh, NC; Department of Neurology (E.F., D.J.T.), Emory University School of Medicine, Atlanta, GA; Department of Neurology (H.K.), Stanford University School of Medicine, Palo Alto, CA; IQVIA (C.B., A.S.), Fairfax, VA; UCB Pharma (S.L.), Smyrna, GA; UCB Pharma (D.F.), Ascot, Berkshire, UK; UCB Pharma (K.H.), Monheim am Rhein, Germany; and FV & JK Consulting Ltd. (V.K.), Guildford, Surrey, UK. S.L. is currently employed by Aerie Pharmaceuticals, Durham, NC.
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Hyunmi Kim
From UCB Pharma (L.K.), Raleigh, NC; Department of Neurology (E.F., D.J.T.), Emory University School of Medicine, Atlanta, GA; Department of Neurology (H.K.), Stanford University School of Medicine, Palo Alto, CA; IQVIA (C.B., A.S.), Fairfax, VA; UCB Pharma (S.L.), Smyrna, GA; UCB Pharma (D.F.), Ascot, Berkshire, UK; UCB Pharma (K.H.), Monheim am Rhein, Germany; and FV & JK Consulting Ltd. (V.K.), Guildford, Surrey, UK. S.L. is currently employed by Aerie Pharmaceuticals, Durham, NC.
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Chakkarin Burudpakdee
From UCB Pharma (L.K.), Raleigh, NC; Department of Neurology (E.F., D.J.T.), Emory University School of Medicine, Atlanta, GA; Department of Neurology (H.K.), Stanford University School of Medicine, Palo Alto, CA; IQVIA (C.B., A.S.), Fairfax, VA; UCB Pharma (S.L.), Smyrna, GA; UCB Pharma (D.F.), Ascot, Berkshire, UK; UCB Pharma (K.H.), Monheim am Rhein, Germany; and FV & JK Consulting Ltd. (V.K.), Guildford, Surrey, UK. S.L. is currently employed by Aerie Pharmaceuticals, Durham, NC.
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Arpamas Seetasith
From UCB Pharma (L.K.), Raleigh, NC; Department of Neurology (E.F., D.J.T.), Emory University School of Medicine, Atlanta, GA; Department of Neurology (H.K.), Stanford University School of Medicine, Palo Alto, CA; IQVIA (C.B., A.S.), Fairfax, VA; UCB Pharma (S.L.), Smyrna, GA; UCB Pharma (D.F.), Ascot, Berkshire, UK; UCB Pharma (K.H.), Monheim am Rhein, Germany; and FV & JK Consulting Ltd. (V.K.), Guildford, Surrey, UK. S.L. is currently employed by Aerie Pharmaceuticals, Durham, NC.
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Scott Laranjo
From UCB Pharma (L.K.), Raleigh, NC; Department of Neurology (E.F., D.J.T.), Emory University School of Medicine, Atlanta, GA; Department of Neurology (H.K.), Stanford University School of Medicine, Palo Alto, CA; IQVIA (C.B., A.S.), Fairfax, VA; UCB Pharma (S.L.), Smyrna, GA; UCB Pharma (D.F.), Ascot, Berkshire, UK; UCB Pharma (K.H.), Monheim am Rhein, Germany; and FV & JK Consulting Ltd. (V.K.), Guildford, Surrey, UK. S.L. is currently employed by Aerie Pharmaceuticals, Durham, NC.
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David Friesen
From UCB Pharma (L.K.), Raleigh, NC; Department of Neurology (E.F., D.J.T.), Emory University School of Medicine, Atlanta, GA; Department of Neurology (H.K.), Stanford University School of Medicine, Palo Alto, CA; IQVIA (C.B., A.S.), Fairfax, VA; UCB Pharma (S.L.), Smyrna, GA; UCB Pharma (D.F.), Ascot, Berkshire, UK; UCB Pharma (K.H.), Monheim am Rhein, Germany; and FV & JK Consulting Ltd. (V.K.), Guildford, Surrey, UK. S.L. is currently employed by Aerie Pharmaceuticals, Durham, NC.
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Kathrin Haeffs
From UCB Pharma (L.K.), Raleigh, NC; Department of Neurology (E.F., D.J.T.), Emory University School of Medicine, Atlanta, GA; Department of Neurology (H.K.), Stanford University School of Medicine, Palo Alto, CA; IQVIA (C.B., A.S.), Fairfax, VA; UCB Pharma (S.L.), Smyrna, GA; UCB Pharma (D.F.), Ascot, Berkshire, UK; UCB Pharma (K.H.), Monheim am Rhein, Germany; and FV & JK Consulting Ltd. (V.K.), Guildford, Surrey, UK. S.L. is currently employed by Aerie Pharmaceuticals, Durham, NC.
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Victor Kiri
From UCB Pharma (L.K.), Raleigh, NC; Department of Neurology (E.F., D.J.T.), Emory University School of Medicine, Atlanta, GA; Department of Neurology (H.K.), Stanford University School of Medicine, Palo Alto, CA; IQVIA (C.B., A.S.), Fairfax, VA; UCB Pharma (S.L.), Smyrna, GA; UCB Pharma (D.F.), Ascot, Berkshire, UK; UCB Pharma (K.H.), Monheim am Rhein, Germany; and FV & JK Consulting Ltd. (V.K.), Guildford, Surrey, UK. S.L. is currently employed by Aerie Pharmaceuticals, Durham, NC.
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David J. Thurman
From UCB Pharma (L.K.), Raleigh, NC; Department of Neurology (E.F., D.J.T.), Emory University School of Medicine, Atlanta, GA; Department of Neurology (H.K.), Stanford University School of Medicine, Palo Alto, CA; IQVIA (C.B., A.S.), Fairfax, VA; UCB Pharma (S.L.), Smyrna, GA; UCB Pharma (D.F.), Ascot, Berkshire, UK; UCB Pharma (K.H.), Monheim am Rhein, Germany; and FV & JK Consulting Ltd. (V.K.), Guildford, Surrey, UK. S.L. is currently employed by Aerie Pharmaceuticals, Durham, NC.
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Citation
Assessment and effect of a gap between new-onset epilepsy diagnosis and treatment in the US
Linda Kalilani, Edward Faught, Hyunmi Kim, Chakkarin Burudpakdee, Arpamas Seetasith, Scott Laranjo, David Friesen, Kathrin Haeffs, Victor Kiri, David J. Thurman
Neurology May 2019, 92 (19) e2197-e2208; DOI: 10.1212/WNL.0000000000007448

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Article Information

vol. 92 no. 19 e2197-e2208
DOI: 
https://doi.org/10.1212/WNL.0000000000007448
PubMed: 
30971487

Published By: 
Wolters Kluwer Health, Inc. on behalf of the American Academy of Neurology
Print ISSN: 
0028-3878
Online ISSN: 
1526-632X
History: 
  • Received September 11, 2018
  • Accepted in final form January 11, 2019
  • First Published April 10, 2019.

Article Versions

  • Previous version (April 10, 2019 - 12:45).
  • You are viewing the most recent version of this article.
Copyright & Usage: 
Copyright © 2019 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-NonCommercial-NoDerivatives License 4.0 (CC BY-NC-ND), which permits downloading and sharing the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal.

Author Disclosures

    1. Linda Kalilani, PhD,
    2. Edward Faught, MD,
    3. Hyunmi Kim, MD, PhD, MPH,
    4. Chakkarin Burudpakdee, PharmD,
    5. Arpamas Seetasith, PhD,
    6. Scott Laranjo, MBA,
    7. David Friesen, BSc,
    8. Kathrin Haeffs, PhD,
    9. Victor Kiri, PhD, MPH and
    10. David J. Thurman, MD, MPH
  1. Linda Kalilani, 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. UCB Pharma, Real World Evidence Methodologist, 6 years

    Consultancies:
    1. NONE

    Speakers' Bureaus:
    1. NONE

    Other Activities:
    1. NONE

    Clinical Procedures or Imaging Studies:
    1. NONE

    Research Support, Commercial Entities:
    1. UCB Pharma

    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. UCB Pharma, 6 years Stock/Stock Options, Medical Equipment & Materials: UCB Pharma, 6 years

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

    Legal Proceedings:
    1. NONE

  3. Edward Faught, MD,
  4. Scientific Advisory Boards:
    1. 1. Eisai Ltd. 2. SK Life Science 3. Sage pharmaceuticals 4. Biogen

    Gifts:
    1. NONE

    Funding for travel or speaker honoraria:
    1. 1. Wake Forest University, honorarium for lectures 2. University of Nebraska, honorarium as visiting professor

    Editorial Boards:
    1. Epilepsy Currents, contributing editor for clinical science, 2015-2021

    Patents:
    1. NONE

    Publishing Royalties:
    1. NONE

    Employment, Commercial Entity:
    1. NONE

    Consultancies:
    1. Medscape

    Speakers' Bureaus:
    1. NONE

    Other Activities:
    1. NONE

    Clinical Procedures or Imaging Studies:
    1. NONE

    Research Support, Commercial Entities:
    1. 1. UCB Pharma 2. Brain Sentinel 3) Eisai Ltd

    Research Support, Government Entities:
    1. National Institutes of Health, 1RO1NS08098-01, consultant, 2013-2017

    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

  5. Hyunmi Kim, MD, PhD, MPH,
  6. 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. I got a research support as a coinvestigator on research projects, which were funded by UCB Pharma.

    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

  7. Chakkarin Burudpakdee, PharmD,
  8. 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. Commercial entity at IQVIA, a consulting research company for the past 4 years.

    Speakers' Bureaus:
    1. NONE

    Other Activities:
    1. NONE

    Clinical Procedures or Imaging Studies:
    1. NONE

    Research Support, Commercial Entities:
    1. I am employed at IQVIA, a consultancy that received financial compensation for conducting and interpreting this analysis. No financial compensation has been provided for writing or reviewing this manuscript as a coauthor.

    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

  9. Arpamas Seetasith, PhD,
  10. 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. Dr. Seetasith works for IQVIA, a consulting firm which received consultancy fees from UCB Pharma to conduct the study.

    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

  11. Scott Laranjo, MBA,
  12. 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. I was a UCB employee from March 2014 to April 2018.

    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. UCB, 3/2014 to 4/2018. Stock/Stock Options, Medical Equipment & Materials: Neurocrine Biosciences 2016 to present, Ultragenix 2017-2018

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

    Legal Proceedings:
    1. NONE

  13. David Friesen, BSc,
  14. 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. UCB

    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

  15. Kathrin Haeffs, 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. UCB Biosciences GmbH, RWE data analyst, 3 years

    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

  17. Victor Kiri, PhD, MPH and
  18. 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. Commercial entity

    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

  19. David J. Thurman, MD, MPH
  20. Scientific Advisory Boards:
    1. NONE

    Gifts:
    1. NONE

    Funding for Travel or Speaker Honoraria:
    1. NONE

    Editorial Boards:
    1. Epilepsia, Editorial Board member, 2012-2017

    Patents:
    1. NONE

    Publishing Royalties:
    1. NONE

    Employment, Commercial Entity:
    1. Emory University School of Medicine, Adjunct Professor of Neurology

    Consultancies:
    1. Consultant to UCB, Inc., 2013-2018

    Speakers' Bureaus:
    1. NONE

    Other Activities:
    1. NONE

    Clinical Procedures or Imaging Studies:
    1. NONE

    Research Support, Commercial Entities:
    1. UCB, Inc.

    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

  1. From UCB Pharma (L.K.), Raleigh, NC; Department of Neurology (E.F., D.J.T.), Emory University School of Medicine, Atlanta, GA; Department of Neurology (H.K.), Stanford University School of Medicine, Palo Alto, CA; IQVIA (C.B., A.S.), Fairfax, VA; UCB Pharma (S.L.), Smyrna, GA; UCB Pharma (D.F.), Ascot, Berkshire, UK; UCB Pharma (K.H.), Monheim am Rhein, Germany; and FV & JK Consulting Ltd. (V.K.), Guildford, Surrey, UK. S.L. is currently employed by Aerie Pharmaceuticals, Durham, NC.
  1. Correspondence
    Dr. Kalilani linda.kalilani{at}ucb.com
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Cited By...

  • 11 Citations
  • Google Scholar

Disputes & Debates: Rapid online correspondence

  • Author response: Assessment and effect of a gap between new-onset epilepsy diagnosis and treatment in the US
    • Linda Kalilani, Real World Evidence Methodologist, UCB Biosciences Inc.
    • Edward Faught, Director of the Emory Epilepsy Center, Department of Neurology, Emory University School of Medicine (Atlanta)
    • David J. Thurman, Adjunct Professor of Neurology, Department of Neurology, Emory University School of Medicine (Atlanta)
    • Hyunmi Kim, Neurologist, Stanford University School of Medicine (Palo Alto, CA)
    Submitted May 20, 2019
  • Reader response: Assessment and effect of a gap between new-onset epilepsy diagnosis and treatment in the US
    • Nitin K. Sethi, Associate Professor of Neurology, New York-Presbyterian Hospital, Weill Cornell Medical Center (New York, NY)
    Submitted April 15, 2019
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