Skip to main content
Advertisement
  • Neurology.org
  • Journals
    • Neurology
    • Clinical Practice
    • Education
    • Genetics
    • Neuroimmunology & Neuroinflammation
  • Online Sections
    • Neurology Video Journal Club
    • Diversity, Equity, & Inclusion (DEI)
    • Neurology: Clinical Practice Accelerator
    • Practice Buzz
    • Practice Current
    • Residents & Fellows
    • Without Borders
  • Collections
    • COVID-19
    • Disputes & Debates
    • Health Disparities
    • Infographics
    • Neurology Future Forecasting Series
    • Null Hypothesis
    • Patient Pages
    • Topics A-Z
    • Translations
  • Podcast
  • CME
  • About
    • About the Journals
    • Contact Us
    • Editorial Board
  • Authors
    • Submit New Manuscript
    • Submit Revised Manuscript
    • Author Center

Advanced Search

Main menu

  • Neurology.org
  • Journals
    • Neurology
    • Clinical Practice
    • Education
    • Genetics
    • Neuroimmunology & Neuroinflammation
  • Online Sections
    • Neurology Video Journal Club
    • Diversity, Equity, & Inclusion (DEI)
    • Neurology: Clinical Practice Accelerator
    • Practice Buzz
    • Practice Current
    • Residents & Fellows
    • Without Borders
  • Collections
    • COVID-19
    • Disputes & Debates
    • Health Disparities
    • Infographics
    • Neurology Future Forecasting Series
    • Null Hypothesis
    • Patient Pages
    • Topics A-Z
    • Translations
  • Podcast
  • CME
  • About
    • About the Journals
    • Contact Us
    • Editorial Board
  • Authors
    • Submit New Manuscript
    • Submit Revised Manuscript
    • Author Center
  • Home
  • Latest Articles
  • Current Issue
  • Past Issues
  • Neurology Video Journal Club
  • Residents & Fellows

User menu

  • Subscribe
  • My Alerts
  • Log in

Search

  • Advanced search
Neurology
Home
The most widely read and highly cited peer-reviewed neurology journal
  • Subscribe
  • My Alerts
  • Log in
Site Logo
  • Home
  • Latest Articles
  • Current Issue
  • Past Issues
  • Neurology Video Journal Club
  • Residents & Fellows

Share

September 24, 2013; 81 (13) Article

Using AD biomarker research results for clinical care

A survey of ADNI investigators

Melanie B. Shulman, Kristin Harkins, Robert C. Green, Jason Karlawish
First published August 21, 2013, DOI: https://doi.org/10.1212/WNL.0b013e3182a55f4a
Melanie B. Shulman
*These authors shared the role of senior author.From the New York University Langone Medical Center (M.B.S.), Comprehensive Center on Brain Aging, Alzheimer's Disease Center, New York; University of Pennsylvania (K.H.), Department of Medicine, Alzheimer's Disease Center, Philadelphia; Brigham and Women's Hospital and Harvard Medical School (R.C.G.), Division of Genetics, Department of Medicine, Partners Center for Personalized Genetic Medicine, Boston, MA; and University of Pennsylvania (J.K.), Department of Medicine, Department of Medical Ethics and Health Policy, Alzheimer's Disease Center, Penn Neurodegenerative Disease Ethics and Policy Program, Philadelphia.
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Kristin Harkins
*These authors shared the role of senior author.From the New York University Langone Medical Center (M.B.S.), Comprehensive Center on Brain Aging, Alzheimer's Disease Center, New York; University of Pennsylvania (K.H.), Department of Medicine, Alzheimer's Disease Center, Philadelphia; Brigham and Women's Hospital and Harvard Medical School (R.C.G.), Division of Genetics, Department of Medicine, Partners Center for Personalized Genetic Medicine, Boston, MA; and University of Pennsylvania (J.K.), Department of Medicine, Department of Medical Ethics and Health Policy, Alzheimer's Disease Center, Penn Neurodegenerative Disease Ethics and Policy Program, Philadelphia.
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Robert C. Green
*These authors shared the role of senior author.From the New York University Langone Medical Center (M.B.S.), Comprehensive Center on Brain Aging, Alzheimer's Disease Center, New York; University of Pennsylvania (K.H.), Department of Medicine, Alzheimer's Disease Center, Philadelphia; Brigham and Women's Hospital and Harvard Medical School (R.C.G.), Division of Genetics, Department of Medicine, Partners Center for Personalized Genetic Medicine, Boston, MA; and University of Pennsylvania (J.K.), Department of Medicine, Department of Medical Ethics and Health Policy, Alzheimer's Disease Center, Penn Neurodegenerative Disease Ethics and Policy Program, Philadelphia.
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Jason Karlawish
*These authors shared the role of senior author.From the New York University Langone Medical Center (M.B.S.), Comprehensive Center on Brain Aging, Alzheimer's Disease Center, New York; University of Pennsylvania (K.H.), Department of Medicine, Alzheimer's Disease Center, Philadelphia; Brigham and Women's Hospital and Harvard Medical School (R.C.G.), Division of Genetics, Department of Medicine, Partners Center for Personalized Genetic Medicine, Boston, MA; and University of Pennsylvania (J.K.), Department of Medicine, Department of Medical Ethics and Health Policy, Alzheimer's Disease Center, Penn Neurodegenerative Disease Ethics and Policy Program, Philadelphia.
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Full PDF
Citation
Using AD biomarker research results for clinical care
A survey of ADNI investigators
Melanie B. Shulman, Kristin Harkins, Robert C. Green, Jason Karlawish
Neurology Sep 2013, 81 (13) 1114-1121; DOI: 10.1212/WNL.0b013e3182a55f4a

Citation Manager Formats

  • BibTeX
  • Bookends
  • EasyBib
  • EndNote (tagged)
  • EndNote 8 (xml)
  • Medlars
  • Mendeley
  • Papers
  • RefWorks Tagged
  • Ref Manager
  • RIS
  • Zotero
Permissions

Make Comment

See Comments

Downloads
359

Share

  • Article
  • Figures & Data
  • Info & Disclosures
Loading

This article requires a subscription to view the full text. If you have a subscription you may use the login form below to view the article. Access to this article can also be purchased.

Abstract

Objective: To inform whether the Alzheimer's Disease Neuroimaging Initiative (ADNI) should change its policy of not returning research results to ADNI participants, we surveyed investigators and research staff about disclosing ADNI biomarker information to research participants, with particular emphasis on amyloid imaging results.

Methods: In April 2012, just before Food and Drug Administration approval of the amyloid-binding radiotracer, florbetapir, all ADNI investigators and personnel were recruited to complete an anonymous online survey that contained fixed choice and free-text questions.

Results: Although ADNI participants often requested amyloid imaging results (the proportions of investigators who reported requests from more than half of their participants with normal cognition or mild cognitive impairment were 20% and 22%, respectively), across all diagnostic groups, the majority of ADNI investigators (approximately 90%) did not return amyloid imaging results to ADNI participants. However, the majority of investigators reported that, if the Food and Drug Administration approved florbetapir, they would support the return of amyloid imaging results to participants with mild cognitive impairment and normal cognition, but they emphasized the need for guidance on how to provide these results to participants and for research to assess the value of returning results as well as how returning results will affect study validity and participant well-being.

Conclusions: A majority of ADNI investigators support returning amyloid imaging results to ADNI participants. The findings that they want guidance on how to do this and research on the impact of disclosure suggest how to develop and monitor a disclosure process.

GLOSSARY

AD=
Alzheimer disease;
ADNI=
Alzheimer's Disease Neuroimaging Initiative;
CDR=
Clinical Dementia Rating;
FDA=
Food and Drug Administration;
FDG=
[18F]-fluorodeoxyglucose;
GDS=
Geriatric Depression Scale;
MCI=
mild cognitive impairment;
MMSE=
Mini-Mental State Examination;
PiB=
Pittsburgh compound B

Footnotes

  • Go to Neurology.org for full disclosures. Funding information and disclosures deemed relevant by the authors, if any, are provided at the end of the article.

  • Editorial, page 1108

  • Received January 24, 2013.
  • Accepted in final form May 21, 2013.
  • © 2013 American Academy of Neurology
View Full Text

AAN Members

We have changed the login procedure to improve access between AAN.com and the Neurology journals. If you are experiencing issues, please log out of AAN.com and clear history and cookies. (For instructions by browser, please click the instruction pages below). After clearing, choose preferred Journal and select login for AAN Members. You will be redirected to a login page where you can log in with your AAN ID number and password. When you are returned to the Journal, your name should appear at the top right of the page.

Google Safari Microsoft Edge Firefox

Click here to login

AAN Non-Member Subscribers

Click here to login

Purchase access

For assistance, please contact:
AAN Members (800) 879-1960 or (612) 928-6000 (International)
Non-AAN Member subscribers (800) 638-3030 or (301) 223-2300 option 3, select 1 (international)

Sign Up
Information on how to subscribe to Neurology and Neurology: Clinical Practice can be found here 

Purchase
Individual access to articles is available through the Add to Cart option on the article page.  Access for 1 day (from the computer you are currently using) is US$ 39.00.  Pay-per-view content is for the use of the payee only, and content may not be further distributed by print or electronic means.  The payee may view, download, and/or print the article for his/her personal, scholarly, research, and educational use.  Distributing copies (electronic or otherwise) of the article is not allowed.

Letters: Rapid online correspondence

No comments have been published for this article.
Comment

REQUIREMENTS

You must ensure that your Disclosures have been updated within the previous six months. Please go to our Submission Site to add or update your Disclosure information.

Your co-authors must send a completed Publishing Agreement Form to Neurology Staff (not necessary for the lead/corresponding author as the form below will suffice) before you upload your comment.

If you are responding to a comment that was written about an article you originally authored:
You (and co-authors) do not need to fill out forms or check disclosures as author forms are still valid
and apply to letter.

Submission specifications:

  • Submissions must be < 200 words with < 5 references. Reference 1 must be the article on which you are commenting.
  • Submissions should not have more than 5 authors. (Exception: original author replies can include all original authors of the article)
  • Submit only on articles published within 6 months of issue date.
  • Do not be redundant. Read any comments already posted on the article prior to submission.
  • Submitted comments are subject to editing and editor review prior to posting.

More guidelines and information on Disputes & Debates

Compose Comment

More information about text formats

Plain text

  • No HTML tags allowed.
  • Web page addresses and e-mail addresses turn into links automatically.
  • Lines and paragraphs break automatically.
Author Information
NOTE: The first author must also be the corresponding author of the comment.
First or given name, e.g. 'Peter'.
Your last, or family, name, e.g. 'MacMoody'.
Your email address, e.g. higgs-boson@gmail.com
Your role and/or occupation, e.g. 'Orthopedic Surgeon'.
Your organization or institution (if applicable), e.g. 'Royal Free Hospital'.
Publishing Agreement
NOTE: All authors, besides the first/corresponding author, must complete a separate Publishing Agreement Form and provide via email to the editorial office before comments can be posted.
CAPTCHA
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.

Vertical Tabs

You May Also be Interested in

Back to top
  • Article
    • Abstract
    • GLOSSARY
    • METHODS
    • RESULTS
    • DISCUSSION
    • AUTHOR CONTRIBUTIONS
    • STUDY FUNDING
    • DISCLOSURE
    • ACKNOWLEDGMENT
    • Footnotes
    • REFERENCES
  • Figures & Data
  • Info & Disclosures
Advertisement

Brain Metabolism Related to Mild Cognitive Impairment and Phenoconversion in Patients With Isolated REM Sleep Behavior Disorder

Dr. David E. Vaillancourt and Dr. Shannon Y. Chiu

► Watch

Related Articles

  • Amyloid imagingThe court of public opinion

Topics Discussed

  • All Clinical Neurology
  • Alzheimer's disease

Alert Me

  • Alert me when eletters are published

Recommended articles

  • Article
    Association of amyloid-β CSF/PET discordance and tau load 5 years later
    Juhan Reimand, Lyduine Collij, Philip Scheltens et al.
    Neurology, September 10, 2020
  • Article
    Temporal Dynamics of β-Amyloid Accumulation in Aging and Alzheimer Disease
    William J. Jagust, Susan M. Landau, for the Alzheimer's Disease Neuroimaging Initiative et al.
    Neurology, January 06, 2021
  • Article
    Objective subtle cognitive difficulties predict future amyloid accumulation and neurodegeneration
    Kelsey R. Thomas, Katherine J. Bangen, Alexandra J. Weigand et al.
    Neurology, December 30, 2019
  • Article
    Alzheimer disease biomarkers may aid in the prognosis of MCI cases initially reverted to normal
    Lisa Vermunt, Alegría J.L. van Paasen, Charlotte E. Teunissen et al.
    Neurology, May 08, 2019
Neurology: 100 (21)

Articles

  • Ahead of Print
  • Current Issue
  • Past Issues
  • Popular Articles
  • Translations

About

  • About the Journals
  • Ethics Policies
  • Editors & Editorial Board
  • Contact Us
  • Advertise

Submit

  • Author Center
  • Submit a Manuscript
  • Information for Reviewers
  • AAN Guidelines
  • Permissions

Subscribers

  • Subscribe
  • Activate a Subscription
  • Sign up for eAlerts
  • RSS Feed
Site Logo
  • Visit neurology Template on Facebook
  • Follow neurology Template on Twitter
  • Visit Neurology on YouTube
  • Neurology
  • Neurology: Clinical Practice
  • Neurology: Education
  • Neurology: Genetics
  • Neurology: Neuroimmunology & Neuroinflammation
  • AAN.com
  • AANnews
  • Continuum
  • Brain & Life
  • Neurology Today

Wolters Kluwer Logo

Neurology | Print ISSN:0028-3878
Online ISSN:1526-632X

© 2023 American Academy of Neurology

  • Privacy Policy
  • Feedback
  • Advertise