• Contact
  • EPAD Academy
Top Bar Menu
TwitterFacebookYouTube
Search...
EPADEPAD
EPAD
European Prevention of Alzheimer's Dementia Consortium
  • Home
  • About
    • Welcome to EPAD
    • Project Objectives
    • Project Structure
    • EPAD Partners
    • Coordination & Management
    • EPAD Q&A
  • Our research
    • Participation in EPAD
      • Participation in EPAD Cohort
      • EPAD Study Visits
      • Trial Locations
      • Participation FAQs
    • The Participant’s Experience
      • The Research Participant Panel
      • EPAD Stories
    • The EPAD platform
      • The EPAD Platform
      • EPAD Benefits
      • Clinical Candidate Selection
      • EPAD FAQs
      • Research Resources
  • Open Access Data
    • Overview
    • Access
    • Data
    • Samples
    • MRI Images
  • News & Publications
    • Latest News
    • Newsletters
    • Publications
    • Videos
Menu back  

EPAD papers identifies expectations related to learning risk status and preferences related to the content, quality, and follow-up of the disclosure process

2018-03-05News

 

Summary:

In clinical trials which target pathophysiological mechanisms associated with Alzheimer’s disease, research participants who are recruited based on biomarker test results should be informed about their increased risk of developing Alzheimer’s dementia. This paper presents the results of a qualitative focus group study of attitudes and concerns toward learning information about biomarker-based risk status among healthy research participants in the United Kingdom and Spain and people with dementia and their supporters/caregivers from countries represented in the European Working Group of People with Dementia of Alzheimer Europe. The study identified expectations related to learning risk status and preferences related to the content, quality, and follow-up of the disclosure process. The latter emphasize distinctions between risk and diagnoses, the importance of clear information about risk, and suggestions for risk reduction, as well as expectations for follow up and support. The implications of these preferences for practice are discussed. Providing details of research participants’ experience and views may serve as a guide for the development of processes for the responsible disclosure of Alzheimer’s disease biomarkers.

Read more on: http://dx.doi.org/10.3233/JAD-170813

Share this post
FacebookTwitterLinkedInGoogle+
Related posts
Closing EPAD article published in the Alzheimer Europe magazine
2021-02-24
Alzheimer Europe launches a report on data sharing in dementia research
2021-02-23
Local actions to keep the EPAD Longitudinal Cohort data collection going
2021-02-17
Neuronet releases its Knowledge Base dashboard
2021-02-01
The final EPAD dataset is now available to the entire research community
2020-11-30
ALZFORUM
Alzforum conference blog mentions EPAD
2020-11-30
Latest News
  • Closing EPAD article published in the Alzheimer Europe magazine
    2021-02-24
  • Alzheimer Europe launches a report on data sharing in dementia research
    2021-02-23
  • Local actions to keep the EPAD Longitudinal Cohort data collection going
    2021-02-17
  • Neuronet releases its Knowledge Base dashboard
    2021-02-01
  • The final EPAD dataset is now available to the entire research community
    2020-11-30
View the EPAD Brochure
thumbnail of EPAD brochure
Speak to the EPAD team
thumbnail of speech bubbles
Twitter
Twitter
EPAD
EPAD
@IMI_EPAD

.@AlzheimerEurope has published a new edition of its “Dementia in Europe” magazine. It includes a closing article on @IMI_EPAD. Our co-leads @craig_ritchie68 and Serge Van der Geyten, reflect on the achievements of the project. Download the PDF here: bit.ly/DementiaInEuro… twitter.com/AlzheimerEurop…

reply retweet favorite
12:40 pm · 2021-02-24
Twitter
EPAD
EPAD
@IMI_EPAD

Last week, we held the first local @IMI_EPAD community meeting among the Scottish research sites, collaborators, academics & scientists who have been involved in our Longitudinal Cohort Study and now continue to contribute to the study locally More info⤵️ ep-ad.org/2021/02/17/loc… pic.twitter.com/MTKmanCURk

reply retweet favorite
6:51 am · 2021-02-24
Twitter
EPAD
EPAD
@IMI_EPAD

Check out the new @AlzheimerEurope report on #DataSharing in #dementia #research, which reviews recent changes in EU research policy and sets out recommendations to improve data sharing. It includes case studies from ADNI, @IMI_EPAD and @IMI_EMIF. ⬇️ Bit.ly/DataSharing_AE twitter.com/AlzheimerEurop…

reply retweet favorite
2:39 pm · 2021-02-23
Twitter
EPAD
EPAD
@IMI_EPAD

Scottish @IMI_EPAD members have been invited to join the first #EPADcommunity meeting. Today, we're discussing about publications, #data access, communications, participant panel, #network & #collaborations. Nice to see some #epadistas sharing their insights 👨‍⚕️👩‍🔬👩‍💻 pic.twitter.com/O1hLAVxk0Q

reply retweet favorite
2:23 pm · 2021-02-17
Twitter
EPAD
EPAD
@IMI_EPAD

The new issue of the @IMI2_NEURONET #newsletter is out with latest news on @IMI_EPAD, @IMI_AMYPAD, @RADARCNS among others. Find out more here: bit.ly/Neuronet-Newsl… twitter.com/IMI2_NEURONET/…

reply retweet favorite
2:12 pm · 2021-02-15
Copyright © 2015-19 EPAD | Created by CMAST and Aridhia
  • Acronyms
  • Legal Notice
  • Privacy Policy
Bottom Menu

efpia-logo EU imi logo

This work has received support from the EU/EFPIA Innovative Medicines Initiative Joint Undertaking EPAD grant agreement nº 115736

This website uses cookies to improve your experience. Accept Read More
Privacy & Cookies Policy

Privacy Overview

This website uses cookies to improve your experience while you navigate through the website. Out of these, the cookies that are categorized as necessary are stored on your browser as they are essential for the working of basic functionalities of the website. We also use third-party cookies that help us analyze and understand how you use this website. These cookies will be stored in your browser only with your consent. You also have the option to opt-out of these cookies. But opting out of some of these cookies may affect your browsing experience.
Necessary
Always Enabled

Necessary cookies are absolutely essential for the website to function properly. This category only includes cookies that ensures basic functionalities and security features of the website. These cookies do not store any personal information.

Non-necessary

Any cookies that may not be particularly necessary for the website to function and is used specifically to collect user personal data via analytics, ads, other embedded contents are termed as non-necessary cookies. It is mandatory to procure user consent prior to running these cookies on your website.