Here in Edinburgh we were the\nvery first EPAD Trial Delivery Center (TDC) site to open which means we have\nparticipants reaching their 5th (Year 3) visit as well as continuing\nrecruitment for new participants. The key to managing this is communication,\nbetween the site staff, our colleagues in other teams who support EPAD and our\nparticipants. We have weekly meetings between the coordinator, research\nassistants and study doctors to discuss all participants attending for visits\nin the upcoming week. These meetings ensure we know who will be seeing the\nparticipant, printing reports from bloods and MRIs that we need to confirm\nsafety to complete lumbar punctures, and ensure we have everything we need to\ncomplete the visit successfully- including most importantly participant\nbreakfast and lunch! We also have a monthly multi-disciplinary team meeting to\ncatch up on how EPAD is going, focusing on recruitment, retention, data\nquality, monitoring and participant feedback. We keep in touch with our MRI,\nlaboratory and lumbar puncture practitioners regularly by phone and email. When\nour participants first join EPAD we find out how they\u2019d like us to communicate\nwith them, phone, email or letter. We then book in upcoming visits far in\nadvance as we know our participants and study partners lead busy lives. This\nalso helps us to know capacity at site each month so we can book in new\nparticipants to join the study. We also organise a participant facing\nnewsletter which includes information on latest EPAD news as well as explaining\nwhy we do certain procedures such as the MRI and the lumbar puncture. These\nnewsletters now go to all Scottish TDCs to send on to their enrolled\nparticipants. <\/p>\n\n\n\n
How are you\nable to find suitable subjects for the cohort?<\/strong> <\/p>\n\n\n\n We have a diverse recruitment\nstrategy at our site to maximise our ability to identify participants most\nlikely to be suitable to join the proof-of-concept studies coming in 2020. When\nthe site first opened in May 2016 we recruited from our two large parent\ncohorts, PREVENT\nDementia<\/a> and Generation Scotland<\/a>. This\nwas a great way to start the recruitment and we successfully recruited over 60\nparticipants from these routes. Any country teleconferences\/meetings\nyou are organizing and how frequent?<\/strong><\/p>\n\n\n\n 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\u2019ve been able to introduce across sites because of this collaboration is the introduction of Join Dementia Research and SHARE as recruitment sources via Velocity.\u00a0\u00a0 Any\nactivities in terms of participant engagement?<\/strong> <\/p>\n\n\n\n One\nof the highlights of running EPAD is definitely being involved with the\nScottish participant panel. The panel formed soon after recruitment started in\nEdinburgh and as of September 2018 started a transition to a represent all of\nthe Scottish TDC. At our next meeting in late March 2019 we will have\nrepresentatives from all four Scottish sites and we\u2019re excited to see what the\nnext year brings. The panel work alongside us as EPADistas to provide feedback\non the participant experience, review documents used in the study, help\ndevelopment of new recruitment and retention ideas and attend conferences and\nevents to showcase EPAD. <\/p>\n\n\n\n Our centre is particularly\nproud of our participant engagement work and each year we have a growing list\nof regular events we host or take part in to raise awareness of brain health.\nEvents vary from lecture series, to concerts, to having a stall in local\nsupermarkets. Regardless of the type of event we host we always get a fantastic\nresponse from the public. Find out more about what we do by following us on\nTwitter @CenDemPrevent<\/a>.<\/p>\n\n\n\n \u201cEPAD 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\u2019s fantastic to be able to offer EPAD to people I see in clinic who are experiencing early symptoms of Alzheimer\u2019s disease and offer them the opportunity to be part of a pioneering project\u201d, said Craig Ritchie<\/strong><\/em><\/p>\n\n\n\n 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)<\/em> <\/p>\n\n\n\n EPAD Update<\/p>\n\n\n\n We currently have 21 sites across Europe<\/strong> enrolling. The EPAD LCS Cohort has now over 1,500 Research Participants<\/strong> 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\u2019s team in San Sebastian (Spain) and Jos\u00e9 Luis Molinuevo\u2018s team in Barcelona screened respectively 14 and 9 new research participants. <\/p>\n","protected":false},"excerpt":{"rendered":" The European Prevention of Alzheimer\u2019s 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). […]<\/p>\n","protected":false},"author":1,"featured_media":3012,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-3011","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news"],"_links":{"self":[{"href":"https:\/\/ep-ad.org\/index.php\/wp-json\/wp\/v2\/posts\/3011","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ep-ad.org\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/ep-ad.org\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/ep-ad.org\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/ep-ad.org\/index.php\/wp-json\/wp\/v2\/comments?post=3011"}],"version-history":[{"count":1,"href":"https:\/\/ep-ad.org\/index.php\/wp-json\/wp\/v2\/posts\/3011\/revisions"}],"predecessor-version":[{"id":10419,"href":"https:\/\/ep-ad.org\/index.php\/wp-json\/wp\/v2\/posts\/3011\/revisions\/10419"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/ep-ad.org\/index.php\/wp-json\/wp\/v2\/media\/3012"}],"wp:attachment":[{"href":"https:\/\/ep-ad.org\/index.php\/wp-json\/wp\/v2\/media?parent=3011"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/ep-ad.org\/index.php\/wp-json\/wp\/v2\/categories?post=3011"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/ep-ad.org\/index.php\/wp-json\/wp\/v2\/tags?post=3011"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
\nWe continue to recruit from Generation Scotland but our numbers from this route\nhave now reduced to one or two a month. \nWe\u2019ve also brought a new parent cohort on board, the DAEM cohort, which\nwe are hoping will bring us in more participants with mild cognitive impairment\n(MCI).
\nOur biggest success over the last year has been using the velocity route to\nidentify potential participants and invite them to join EPAD. We work directly\nwith our clinical colleagues in our local memory services who refer people with\nMCI directly to EPAD. We have also been rolling out the Scottish Brain Health\nRegister (SBHR) which received some set-up funding from the EPAD LCS\nRecruitment Task Force, a consent to consent research register, which allows\npeople with concerns about their brain, or the public interested in brain\nhealth, to be connected to research opportunities in their local area. Follow\nus on Twitter to find out more @ScotBHR<\/a>! SBHR\nallows us to offer EPAD to people who might not have been referred at their\nclinic visit. We also work with the national registers of Join Dementia Research<\/a> and\nSHARE, and are hoping to start working with the Scottish Primary Care Research\nNetwork to offer EPAD to people with MCI who are registered with GP surgeries\nin our local area. We\u2019ve seen these recruitment efforts help us move towards a\ncohort richer in people with a CDR 0.5 and we are now ambitious in our aims to\nsignificantly increase these efforts over 2019. <\/p>\n\n\n\n
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. <\/p>\n\n\n\n![\"\"](\"https:\/\/ep-ad.org\/wp-content\/uploads\/2015\/08\/EPAD-partners-logo-stack_0023_The-University-of-Edinburgh-1.png\"){kind=logo}
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