• 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
    • MRI Images
  • Sample Access
  • News & Publications
    • Latest News
    • Newsletters
    • Publications
    • Videos
Menu back  

EPAD Research Participant Panel invited to speak at the IMI Stakeholder Forum

2017-10-19News

On 18-19 October, IMI organised its Stakeholder Forum 2017 in Brussels under the theme ‘Open innovation’. On the first day of the event, IMI was looked through the lens of open innovation and the results that IMI is delivering were discussed. The day was focused on the IMI’s public-private partnership model, some IMI flagship projects and the IMI future strategies. On the second day of the Stakeholder Forum, two parallel tracks focused on examples of IMI’s open innovation in practice. The first track was on patient forum co-developed by IMI and the European Patients’ Forum (EPF) and was focused on patient engagement and collaboration. The second track was on the microbiome, with a view to seeing how IMI could best work in this area.

We’re very thankful that Eileen, a Member of the EPAD Research Participant Panel, was willing to come along to the IMI Stakeholder Forum to talk about her actual involvement in the research and her contribution via the panel.

Here are Eileen’s impressions about the EPAD project and its Research Participant Panel:

“The Participant Panel is in the early stages. We have met with each other and Prof. Craig Ritchie twice, to begin asking questions about the EPAD project, the role of the Participant Panel and how that can be achieved.
To go back to the beginning, I think the invitation to become a volunteer in the EPAD project came by letter or phone (I assumed I had been asked to participate because my parents had Alzheimer’ disease). Previously, I had taken part in Generation Scotland and The Million Women Study.
Subsequent contact was always helpful, with parking space arranged for us and one of the EPAD team even coming out to open a barrier which we couldn’t get to operate!

The first visit to Edinburgh for the first tests was fascinating. All of the volunteers agreed that the young team tried their best to be welcoming and reassuring. The NHS personnel were also impressive, kind and so competent. The MRI scan let me have a lie down and a rest and the lumbar puncture was done in textbook fashion with the young doctor talking me through the procedure. We even managed an interesting conversation.
I was familiar with the cognitive tests (e.g. picture recognition, recall of information). Although the computer screen tests were trickier, I found out later that other people had thought the same, so that was OK.

All the participants had thorough medical examinations – 4 out of 7 discovered previously unidentified conditions which could then be treated – 1 out of 7 was already taking medication as a result of being on a clinical trial for another condition. We were all grateful to the EPAD team’s prompt response to the apprehension about having a lumber puncture done. A video was put on the website to demonstrate the procedure in the hope that more information would help people feel more relaxed.

These were unlooked for positive outcomes to taking part in research. From the brief conversations with other volunteers, we all feel that this research to help prevent Alzheimer’s dementia is very important and we are very glad to be able to contribute. Some of us have watched loved ones disappear before our eyes, while still alive with this disease. We want to stand with the young academics and researchers helping to find a cure or amelioration for it.
Research has done so much to advance treatment in heart disease and cancers. Hopefully EPAD’s assault on the prevention and cure of Alzheimer’s dementia will bring similar results.

Attending the 3rd EPAD General Assembly Meeting in Stockholm as the first Research Participant was a wonderful opportunity to see and hear the hardworking application and enthusiasm of the EPAD family, as Prof Ritchie calls us.
There was so much debate and discussion, sharing of data and encouragement to meet targets.
Several people came forward to thank me for taking part but all I wanted to do was thank them for being part of this huge endeavour. Knowing we are listened to gives us a great deal of faith in the team.

I look forward to the next conference in Brussels and to sharing news from that with everyone when I get back.”

Share this post
FacebookTwitterLinkedInGoogle+
Related posts
Edinburgh Dementia Prevention Summer School 2022
2022-06-30
EPAD at AAIC22!
2022-06-30
ADDI NeuroToolKit Data Hackathon
2022-05-17
The Neuronet Coordination and Support Action releases updated Decision Tool for engagement with Regulatory and Health Technology Assessment bodies
2022-05-09
First national follow-on study to EPAD LCS launches
2022-04-07
The EPAD genomic data is now available on the Alzheimer’s Disease Workbench
2022-03-10
Latest News
  • Edinburgh Dementia Prevention Summer School 2022
    2022-06-30
  • EPAD at AAIC22!
    2022-06-30
  • ADDI NeuroToolKit Data Hackathon
    2022-05-17
  • The Neuronet Coordination and Support Action releases updated Decision Tool for engagement with Regulatory and Health Technology Assessment bodies
    2022-05-09
  • First national follow-on study to EPAD LCS launches
    2022-04-07
View the EPAD Brochure
thumbnail of EPAD brochure
Speak to the EPAD team
thumbnail of speech bubbles
Twitter
Twitter
EPAD
EPAD
@IMI_EPAD

The @AlzData #NeuroToolKit Data Hackathon has started! 45 teams are uing the NTKApp, @IMI_EPAD datasets, and statistical analysis tools available on the #ADWorkbench to investigate the potential clinical utility of different biomarkers in #Alzheimer’s disease. twitter.com/AlzData/status…

reply retweet favorite
10:34 am · 2022-07-04
Twitter
EPAD
EPAD
@IMI_EPAD

The @CenDemPrevent Summer School, a 4-day interactive course on #brainhealth, is designed for clinicians, researchers and students. Space is limited, sign up quickly! 🗓️26-29 September 📍Edinburgh For more info, including programme⤵️ ep-ad.org/edinburgh-deme… pic.twitter.com/FSypbvWK4L

reply retweet favorite
12:38 pm · 2022-06-30
Twitter
EPAD
EPAD
@IMI_EPAD

There’s still time to join the @AlzData #NeuroToolKit #Data Hackathon! Registration closes on 24 June! Participants will work with @IMI_EPAD datasets and utilise the tools on the #ADWorkbench. Interested in participating? ➡️alzheimersdata.org/hackathon twitter.com/IMI_EPAD/statu…

reply retweet favorite
7:21 am · 2022-06-22
Twitter
EPAD
EPAD
@IMI_EPAD

Today, colleagues from @AlzData visited @CenDemPrevent to meet with those involved in various programmes including @IMI_EPAD @AD_PREVENT. Many relevant discussions and great catch-up! #BrainHealth #datasharing #collaboration @craig_ritchie68 @samdansobe @GregorySarah @CindyBirck pic.twitter.com/Mr3trKeuoz

reply retweet favorite
2:43 pm · 2022-06-15
Twitter
EPAD
EPAD
@IMI_EPAD

Have a look on the new @AlzheimerEurope #DementiaInEurope magazine featuring an article on @IMI_EPAD and its collaboration with @AlzData to make our data findable, accessible and reusable. @craig_ritchie68 ⤵️ alzheimer-europe.org/resource… twitter.com/AlzheimerEurop… pic.twitter.com/vLuW3HMLUh

reply retweet favorite
1:09 pm · 2022-06-14
Copyright © 2015-2021 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.
SAVE & ACCEPT