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February 25, 2014; 82 (8) Views & Reviews

Confidentiality in preclinical Alzheimer disease studies

When research and medical records meet

Jalayne J. Arias, Jason Karlawish
First published January 29, 2014, DOI: https://doi.org/10.1212/WNL.0000000000000153
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Article Information

vol. 82 no. 8 725-729
DOI: 
https://doi.org/10.1212/WNL.0000000000000153
PubMed: 
24477112
Published By: 
Wolters Kluwer Health, Inc. on behalf of the American Academy of Neurology
Print ISSN: 
0028-3878
Online ISSN: 
1526-632X
History: 
  • Received August 27, 2013
  • Accepted in final form November 19, 2013
  • First Published January 29, 2014.

Article Versions

Copyright & Usage: 
© 2014 American Academy of Neurology

Author Disclosures

    1. Jalayne J. Arias, JD and
    2. Jason Karlawish, MD
  1. Jalayne J. Arias, JD and
    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

  2. Jason Karlawish, MD
    3. Scientific Advisory Boards:

    1. Scientific Advisory Board of Senior Bridge Inc. ended as of April 2012.

    Gifts:

    1. NONE

    Funding for Travel or Speaker Honoraria:

    1. NONE

    Editorial Boards:

    1. Associate Editor, Journal of the American Geriatrics Society

    Patents:

    1. NONE

    Publishing Royalties:

    1. (1) Treating Dementia: Do we have a pill for that? Johns Hopkins University, Press, 2005; (2) Open Wound: The Tragic Obsession of Dr. William Beaumont, University of Michigan Press, 2011

    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 am a co-investigator on a project funded by GE healthcare through a contract with Tufts university to investigate use of amyloid imaging in persons with MCI.

    Research Support, Government Entities:

    1. (1) NINDS 1 R01 NS065087-01, PI, 2009-2012; (2) NIA P30-AG-10124, Co-I, 2011-2016; (3) NIA U01�AG10483, Chair, Internal Ethics Committee, 2012-2017; (4) NIA P30-AG-031043, Co-I, 2007-2012; (5) NIA P30-AG034546, Co-I, 2009-2014; (6) NHGRI/NIA R01-HG-002213, site PI, 2010-2014; (7) NIA 1RC2-AG-036592, Co-I, 2009-2012; (8) NIA 1R13-AG-041623-01, Co-I, 2011-2014; (9) NIA 1-RO1-AG-038440-01A1, Co-I, 2011-2015; (10) NINDS P50NS053488-01, Co-I, 2007�2012; (11) NIH/NIDDK R01-DK-090388-01, Co-I, 2011-2014.

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. (1) Robert Wood Johnson Foundation Investigator Award in Health Policy Research; (2) The Marian S. Ware Alzheimer Program, National Philanthropic Trust; (3) The Metlife Foundation; (4) The Michael J. Fox Foundation (5) Robert Wood Johnson Foundation Applying Behavioral Economics to Perplexing Problems in Health and Health Care

    Stock/Stock Options/Board of Directors Compensation:

    1. NONE

    License Fee Payments, Technology or Inventions:

    1. Co-holder of a license on an integrated neurodegenerative disease database based the the University of Pennsylvania

    Royalty Payments, Technology or Inventions:

    1. NONE

    Stock/Stock Options, Research Sponsor:

    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:

    1. Shares in Senior Bridge Inc., a company that sells care management were sold in April 2012 for a value >$5000.

    Legal Proceedings:

    1. NONE

  1. From the Cleveland Clinic (J.J.A.), Center for Ethics, Humanities, and Spiritual Care, Department of Bioethics, Cleveland, OH; and University of Pennsylvania (J.K.), Perelman School of Medicine, Departments of Medicine and Medical Ethics and Health Policy, Alzheimer’s Disease Core Center, Penn Neurodegenerative Disease Ethics and Policy Program, Philadelphia, PA.
  1. Correspondence to Dr. Karlawish: Jason.karlawish{at}uphs.upenn.edu
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