• 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  

Spotlight on University of Edinburgh/NHS Lothian

2019-03-27News

The European Prevention of Alzheimer’s Dementia initiative (EPAD) recruited its first Research Participant in May 2016 via the University of Edinburgh (UK). The team of Craig Ritchie (principal investigator of the EPAD project in the University of Edinburgh and EPAD Project Co-coordinator) has currently recruited over 100 participants in the EPAD Longitudinal Cohort Study (LCS). We caught up with his team and asked them a few questions about their best practices and recruitment strategies.

Any top tips for running the LCS efficiently at your site?

Here in Edinburgh we were the very first EPAD Trial Delivery Center (TDC) site to open which means we have participants reaching their 5th (Year 3) visit as well as continuing recruitment for new participants. The key to managing this is communication, between the site staff, our colleagues in other teams who support EPAD and our participants. We have weekly meetings between the coordinator, research assistants and study doctors to discuss all participants attending for visits in the upcoming week. These meetings ensure we know who will be seeing the participant, printing reports from bloods and MRIs that we need to confirm safety to complete lumbar punctures, and ensure we have everything we need to complete the visit successfully- including most importantly participant breakfast and lunch! We also have a monthly multi-disciplinary team meeting to catch up on how EPAD is going, focusing on recruitment, retention, data quality, monitoring and participant feedback. We keep in touch with our MRI, laboratory and lumbar puncture practitioners regularly by phone and email. When our participants first join EPAD we find out how they’d like us to communicate with them, phone, email or letter. We then book in upcoming visits far in advance as we know our participants and study partners lead busy lives. This also helps us to know capacity at site each month so we can book in new participants to join the study. We also organise a participant facing newsletter which includes information on latest EPAD news as well as explaining why we do certain procedures such as the MRI and the lumbar puncture. These newsletters now go to all Scottish TDCs to send on to their enrolled participants.

How are you able to find suitable subjects for the cohort?

We have a diverse recruitment strategy at our site to maximise our ability to identify participants most likely to be suitable to join the proof-of-concept studies coming in 2020. When the site first opened in May 2016 we recruited from our two large parent cohorts, PREVENT Dementia and Generation Scotland. This was a great way to start the recruitment and we successfully recruited over 60 participants from these routes.
We continue to recruit from Generation Scotland but our numbers from this route have now reduced to one or two a month.  We’ve also brought a new parent cohort on board, the DAEM cohort, which we are hoping will bring us in more participants with mild cognitive impairment (MCI).
Our biggest success over the last year has been using the velocity route to identify potential participants and invite them to join EPAD. We work directly with our clinical colleagues in our local memory services who refer people with MCI directly to EPAD. We have also been rolling out the Scottish Brain Health Register (SBHR) which received some set-up funding from the EPAD LCS Recruitment Task Force, a consent to consent research register, which allows people with concerns about their brain, or the public interested in brain health, to be connected to research opportunities in their local area. Follow us on Twitter to find out more @ScotBHR! SBHR allows us to offer EPAD to people who might not have been referred at their clinic visit. We also work with the national registers of Join Dementia Research and SHARE, and are hoping to start working with the Scottish Primary Care Research Network to offer EPAD to people with MCI who are registered with GP surgeries in our local area. We’ve seen these recruitment efforts help us move towards a cohort richer in people with a CDR 0.5 and we are now ambitious in our aims to significantly increase these efforts over 2019.

Any country teleconferences/meetings you are organizing and how frequent?

We are incredibly lucky to be part of a great network of sites in Scotland and frequently talk to our colleagues in the Tayside, Glasgow and Grampian TDCs. We join monthly calls chaired by Emma Law, Network Manager and EPAD National Coordinator, to share best practice and identify challenges across sites that can be tackled with a cross-site strategy. Examples of strategies that we’ve been able to introduce across sites because of this collaboration is the introduction of Join Dementia Research and SHARE as recruitment sources via Velocity.  
We also contribute to the planning of the annual Scottish sites conference in Aberdeen in August. The first of these was held in August 2018 and was a great success. Planning for August 2019 is well underway, with the meeting a perfect place to showcase site activity, network with our EPAD colleagues across Scotland and update our participants about EPADs latest findings. You can read more about the conference here.

Any activities in terms of participant engagement?

One of the highlights of running EPAD is definitely being involved with the Scottish participant panel. The panel formed soon after recruitment started in Edinburgh and as of September 2018 started a transition to a represent all of the Scottish TDC. At our next meeting in late March 2019 we will have representatives from all four Scottish sites and we’re excited to see what the next year brings. The panel work alongside us as EPADistas to provide feedback on the participant experience, review documents used in the study, help development of new recruitment and retention ideas and attend conferences and events to showcase EPAD.

Our centre is particularly proud of our participant engagement work and each year we have a growing list of regular events we host or take part in to raise awareness of brain health. Events vary from lecture series, to concerts, to having a stall in local supermarkets. Regardless of the type of event we host we always get a fantastic response from the public. Find out more about what we do by following us on Twitter @CenDemPrevent.

“EPAD is leading the way in brain health research across Europe and we are delighted to lead this from Edinburgh. The EPAD cohort is one of our flagship studies in the Edinburgh Dementia Prevention research group. It’s fantastic to be able to offer EPAD to people I see in clinic who are experiencing early symptoms of Alzheimer’s disease and offer them the opportunity to be part of a pioneering project”, said Craig Ritchie

Pictured: From left to right: Dr Ben Grey (Study Doctor), Prof Craig Ritchie (PI/CI/EPAD Co-Coordinator), Hannah Jobse (Research Assistant), Dr Catherine Pennington (Sub-investigator), Sarah Gregory (Study Coordinator), Clare Dolan (Research Assistant), Neil Fullerton (Research Assistant), Dr Alison Hunter (Study Doctor), Sarah Sparks (Research Assistant)

EPAD Update

We currently have 21 sites across Europe enrolling. The EPAD LCS Cohort has now over 1,500 Research Participants screened! Congratulations to the TDC in Bristol, who recruited participant number 1,500. There was a total of 83 new research participants enrolled in the EPAD study in February. We are pleased that Pablo Martinez-Lage’s team in San Sebastian (Spain) and José Luis Molinuevo‘s team in Barcelona screened respectively 14 and 9 new research participants.

Share this post
FacebookTwitterLinkedInGoogle+
Related posts
Analysis of multiple steroids in saliva in the EPAD study
2023-03-02
Hormone Replacement Therapy could ward off Alzheimer’s among at-risk women
2023-01-16
Associations between Mediterranean diet and cognition in the pan-European EPAD LCS
2022-12-09
Bruno Steinkraus
Interview with Dr. Bruno Steinkraus, Chief Scientific Officer at Hummingbird Diagnostics GmbH
2022-11-25
New paper defining and discussing the substantial assets of the EPAD project is out!
2022-11-23
New paper using the EPAD data for an analysis of sleep quality and efficiency
2022-11-03
Latest News
  • Analysis of multiple steroids in saliva in the EPAD study
    2023-03-02
  • Hormone Replacement Therapy could ward off Alzheimer’s among at-risk women
    2023-01-16
  • Associations between Mediterranean diet and cognition in the pan-European EPAD LCS
    2022-12-09
  • Bruno Steinkraus
    Interview with Dr. Bruno Steinkraus, Chief Scientific Officer at Hummingbird Diagnostics GmbH
    2022-11-25
  • New paper defining and discussing the substantial assets of the EPAD project is out!
    2022-11-23
View the EPAD Brochure
thumbnail of EPAD brochure
Speak to the EPAD team
thumbnail of speech bubbles
Twitter
Twitter
EPAD
EPAD
@IMI_EPAD

📢@imi_epnd has launched its Cohort Catalogue, a central, open & accessible repository for researchers to discover studies & search metadata. Currently 67 research cohorts from 17 countries across Europe including @IMI_EPAD-VUmc participants ⬇️ eurekalert.org/news-releases/… twitter.com/imi_epnd/statu…

reply retweet favorite
9:56 am · 2023-03-14
Twitter
EPAD
EPAD
@IMI_EPAD

NEW paper published in @MetabolitesMDPI using LC-MS/MS method to determine salivary steroids using @IMI_EPAD samples. Congratulations @GregorySarah @zinghomer @guider50 @scottgdenham👏 @EdMassSpecCore @IMI2_NEURONET @IHIEurope #mdpimetabolites mdpi.com/2133518

reply retweet favorite
12:55 pm · 2023-03-02
Twitter
EPAD
EPAD
@IMI_EPAD

"There is a growing consensus that individual research results that are potentially relevant should be reported to research participants” & “Our work was positively received by the EPAD partners, and formed the basis for the set-up & the conduct of the study,” said Eline Bunnik

reply retweet favorite
10:32 am · 2023-01-31
Twitter
EPAD
EPAD
@IMI_EPAD

Have a look on the @IHIEurope newsletter including a spotlight on IMI results from projects on diabetes @HypoResolve and #Alzheimer’s disease @IMI_EPAD @IMI_AMYPAD ⬇️ Read it: bit.ly/3jeaxdM twitter.com/IHIEurope/stat…

reply retweet favorite
10:30 am · 2023-01-31
Twitter
EPAD
EPAD
@IMI_EPAD

17 centres have contributed to the @IMI_AMYPAD Prognostic Study across 11 Parent Cohorts including @IMI_EPAD. Have a look on the latest AMYPAD paper published in @FrontNeurol ⬇️ twitter.com/IMI_AMYPAD/sta…

reply retweet favorite
8:19 am · 2023-01-30
Workstream Progress
Workstream 120%
Workstream 232%
Workstream 310%
Workstream 446%
Contact us

Submitclear

Recent Posts
  • Analysis of multiple steroids in saliva in the EPAD study
  • Hormone Replacement Therapy could ward off Alzheimer’s among at-risk women
  • Associations between Mediterranean diet and cognition in the pan-European EPAD LCS
  • Interview with Dr. Bruno Steinkraus, Chief Scientific Officer at Hummingbird Diagnostics GmbH
  • New paper defining and discussing the substantial assets of the EPAD project is out!
Recent Comments
  • The EPAD genomic data is now available on the Alzheimer’s Disease Workbench on The EPAD genomic data is now available on the Alzheimer’s Disease Workbench
  • ADDI celebrates one year of achievements – Neuronet on ADDI celebrates one year of achievements
  • EPAD dataset is now available on the Alzheimer’s Disease Workbench on The final EPAD dataset is now available on the Alzheimer’s Disease Workbench
  • The final EPAD dataset is now available to the entire research community on The final EPAD dataset is now available to the entire research community
  • The ERC has awarded an ERC grant to identify age-related human blood factors as a therapeutic target for Alzheimer’s disease – Neuronet on New ERC starting grant to identify age-related human blood factors as a therapeutic target for Alzheimer’s disease
Archives
  • March 2023
  • January 2023
  • December 2022
  • November 2022
  • October 2022
  • September 2022
  • August 2022
  • July 2022
  • June 2022
  • May 2022
  • April 2022
  • March 2022
  • January 2022
  • November 2021
  • October 2021
  • September 2021
  • August 2021
  • July 2021
  • June 2021
  • May 2021
  • April 2021
  • March 2021
  • February 2021
  • November 2020
  • October 2020
  • September 2020
  • July 2020
  • June 2020
  • April 2020
  • March 2020
  • February 2020
  • January 2020
  • December 2019
  • November 2019
  • October 2019
  • September 2019
  • August 2019
  • July 2019
  • June 2019
  • May 2019
  • April 2019
  • March 2019
  • February 2019
  • January 2019
  • December 2018
  • November 2018
  • October 2018
  • September 2018
  • August 2018
  • July 2018
  • June 2018
  • May 2018
  • April 2018
  • March 2018
  • February 2018
  • January 2018
  • December 2017
  • November 2017
  • October 2017
  • September 2017
  • July 2017
  • June 2017
  • May 2017
  • April 2017
  • March 2017
  • February 2017
  • January 2017
  • December 2016
  • November 2016
  • October 2016
  • September 2016
  • August 2016
  • July 2016
  • June 2016
  • May 2016
  • April 2016
  • March 2016
  • February 2016
  • January 2016
  • December 2015
  • November 2015
  • October 2015
  • September 2015
  • August 2015
  • June 2015
  • May 2015
  • April 2015
Categories
  • EPAD Academy
  • News
Meta
  • Log in
  • Entries feed
  • Comments feed
  • WordPress.org
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