Author: admin

  • EPAD WP6 team reviews communication strategy and makes plan for 2019

    EPAD WP6 team reviews communication strategy and makes plan for 2019

    EPAD WP6 team reviews communication strategy and makes plan for 2019

    On 4-5 October, the EPAD communication team held a meeting at the VUmc Alzheimercentrum in Amsterdam to review the project’s communication strategy. On the first day, the agenda covered what the members of the EPAD WP6 communication team have achieved so far. The communications activities from 2015-2018 were reviewed to analyse their strengths, weaknesses and opportunities. The team looked back at some of the activities and tools including the website, social media, newsletter, videos and press releases. The next session was focused on the communications capacities at Trial Delivery Center (TDC) level. Representatives from four TDCs (VU university medical center, Barcelonaβeta Brain Research Center, University of Edinburgh, University of Oxford) had the opportunity to join the meeting to share their recruitment and retention strategies from a communications point of view. They presented an overview of some of their ongoing communication activities. This session was really useful and a lot of ideas were discussed.

    The second day placed the emphasis squarely on the communication focus plan for 2019. Very fruitful brainstorming sessions took place in which both internal and external communication goals and expectations were discussed. Particular attention was paid to communication with TDCs and research participants and retention of research participants in the EPAD Cohort. The WP6 team also checked the upcoming project milestones for which external communications may be necessary.

    The meeting was attended by Sean Knox (Biogen), Jean Georges (Alzheimer Europe), Cindy Birck (Alzheimer Europe), Laura Carrera Carballés (Janssen), Vanessa Bosmans (Janssen), Ana Belén Callado Gill (Barcelonaβeta Brain Research Center), Stina Saunders (University of Edinburgh), Judi Syson (University of Edinburgh), Sarah Gregory (University of Edinburgh), Andy Bolan (Biogen), Shona Forster (University of Oxford), Solange Cleutjens (VU university medical center) and Casper de Boer (VU university medical center). Iva Knezevic (Synapse) joined the meeting by phone.  It was a successful and productive meeting with a lot of discussions and suggestions. The team is looking forward to implementing them now!

    by

    in

    On 4-5 October, the EPAD communication team held a meeting at the VUmc Alzheimercentrum in Amsterdam to review the project’s communication strategy. On the first day, the agenda covered what the members of the EPAD WP6 communication team have achieved so far. The communications activities from 2015-2018 were reviewed to analyse their strengths, weaknesses and…

  • Our epadistas organised several events to mark World Alzheimer’s Day

    Our epadistas organised several events to mark World Alzheimer’s Day

    Our epadistas organised several events to mark World Alzheimer’s Day

    World Alzheimer’s Month is the international campaign to raise awareness and challenge the stigma that surrounds dementia. September 2018 is World Alzheimer’s Month (WAM), including World Alzheimer’s Day (WAD) on 21 September.  The 7th global WAM utilises the theme of “Every 3 seconds” to emphasise the huge global impact of dementia worldwide.

    As every year on World Alzheimer’s Day, many Alzheimer associations and other stakeholders around the world organised advocacy and information provision events to show the global impact of dementia and promote dementia awareness. September has been a busy month for our EPAD partners and TDCs, with a number of meetings and events taking place to join the World Alzheimer’s Month campaign. This year, we are glad to report some activities done by our Epadistas.

    BBRC, Pasqual Maragall Foundation (Barcelona, Spain) 

    The Pasqual Maragall Foundation, which prompted the Barcelonaβeta Brain Research Center (BBRC), is celebrating its 10th anniversary. With the aim to “bring back” memories to its founder Pasqual Maragall, who was diagnosed with Alzheimer’s disease in 2007 and created the foundation one year later, the foundation launched a book in which 40 friends of the former mayor of Barcelona and president of Catalonia remember an anecdote with him. Part of the benefits of the book will go to the research on Alzheimer’s prevention carried out at the BBRC. The book was presented the 20th of September in Barcelona, in an event with more than 600 attendants.

    Also coinciding with the World Alzheimer’s Day, the Pasqual Maragall Foundation, together with “la Caixa” Banking Foundation, covered the names of the plaques of several streets in the Ópera neighbourhood in Madrid. The aim of the street campaign was to raise awareness about the symptoms of Alzheimer’s disease, such as disorientation, and the need to invest more money on research. You can see the video of the campaign here.

    Biogen (Baar, Switzerland)

    This year, on World Alzheimer’s Day and through World Alzheimer’s Month, Biogen engaged in various educational and communications initiatives, to share the depth of commitment, passion and ambition of the people working in Alzheimer’s. From research & development, medical and patient advocacy colleagues across the company delivered a message of defiance in bringing innovation to the Alzheimer’s disease community. Specifically, Biogen partnered with the European Federation of Pharmaceutical Industries and Associations (EFPIA) to publish pledges committing to the clinical research and tackling of stigma in Alzheimer’s disease. Throughout September Biogen also worked with RAND corporation to highlight health system readiness in Europe to new Alzheimer’s innovations. Outside of Europe, Biogen supported several of the Alzheimer’s Association “Walk to End Alzheimer’s” in the US. As a company Biogen is proud to demonstrate its commitment to the millions of people living with Alzheimer’s disease and their loved ones. Biogen has made a long-term commitment to furthering Alzheimer’s disease research and treatment, and remains driven by the profound unmet needs of patients, families, caregivers and society.

    CHUT (Toulouse, France)

    Together with the French Alzheimer association « France Alzheimer » of its department, the CHUT organised an event on World Alzheimer’s Day entitled «Changeons de regard pour comprendre et agir ». Dr Pierre Jean Ousset gave a presentation on Alzheimer’s disease. The programme could be downloaded here.

    CHRU (Lille, France)

    Several events were organised on World Alzheimer’s Day in Lille including a meeting to celebrate the 25 years of the Bailleul advanced consultation. This meeting organised for the general public at the “centre médical des monts de flandres” involved many CHRU’s consultants. Moreover, CHRU had a great media coverage. TF1, the private national French TV channel considered as the most popular domestic network, diffused a TV reportage on their “centre de la mémoire”.

    IRCCS Fatebenefratelli (Brescia, Italy)

    As every year for the World Alzheimer’s Day, the well-known Millennium gym in Brescia – located in front of the Brescia’s Institute “IRCCS Centro San Giovanni di Dio Fatebenefratelli” – organises an event called “Move for Alzheimer / Muoviamoci per l’Alzheimer” to raise funds and support research for Alzheimer’s disease. This year, the event lasted one week (September 13-21) and the program consisted of a series of sporting events aimed at the entire population, such as pole dance, soccer and yoga. During this occasion, some researchers of the IRCCS Fatebenefratelli took the opportunity to explain the research activity of the Institute at dedicated stands.

    On September 21, an informational meeting aimed at patients and their relatives was also organised at the IRCCS Fatebenefratelli to increase the awareness on Alzheimer’s disease and patient’s care. The Chief Medical Officer, the director-General, a clinician and a qualified trainer of the institute had the opportunity to be speakers at this event.

    Janssen (Beerse, Belgium)

    Each year on September 21, which marks World Alzheimer Day, an international campaign is being organised to raise awareness and challenge the stigma surrounding dementia. Janssen R&D Neuroscience organised several internal initiatives to bring attention to this disease. A fourth edition of the Janssen Talk Café Dementia was hosted at Janssen Beerse, followed by a play about caregiving. For this edition, Janssen R&D Neuroscience focused on ‘treatment of dementia – the key to success’. In this interactive session, Janssen employees were invited to get more insight into what is known about Alzheimer’s disease treatments. Additionally, cupcakes were sold to support Alzheimer’s research (Stichiting Alzheimer Onderzoek).

    Karolinska Institutet (Stockholm, Sweden)

    On Sept 21st Karolinska Institutet and Theme Aging, Karolinska University Hospital, recognised the seventh World Alzheimer’s Day. They took the opportunity to attend lectures from frontiers, among others Prof Miia Kivipelto and her team, within the field of Alzheimer prevention, diagnostics, and treatment. In a parallel event, sponsored by the Swedish Alzheimer Foundation, Associate Prof Alina Solomon gave a lecture regarding how we can prevent dementia and multi-domain interventions. After that, a joint visit to their new Memory Clinic at Karolinska University Hospital Solna was organised. During the evening of the same day Prof Kivipelto traveled to Helsinki, Finland to participate in the gala event of Alzheimer Association Finland. She received the first time ever gold medal awarded for her contributions for dementia prevention and patient care.

    Paris Nord GH de Lariboisiere (Paris, France)

    For the World Alzheimer’s Day, France Alzheimer organised an event from 21st September to 23rd September in Paris. In the space of these three days, several topics were presented and discussed including adapted physical activities, prevention, early diagnosis, treatments, scientific research, nutrition and carers in professional activity. 33 hours of workshops and 17 presentations were planned on the occasion of the 6th edition of the “Alzheimer Village”. The program could be downloaded here. We are glad to see that thee members of the Paris Nord GH de Lariboisiere contributed to this event. On 22nd September, Dr Julien Dumurgier and Aurelie Meauzoone gave a presentation about the early diagosis. Pr Claire Paquet reported about the frontotemporal degenerations and the Lewy body disease.

    Tayside (Dundee, Scotland)

    In Tayside, the team had an exhibition stall promoting dementia research in the Clinical Research Centre at Ninewells Hospital in Dundee. In addition, there’s been some activity on their social media accounts.

    UNIGE (Geneva, Switzerland)

    On the occasion of World Alzheimer’s Day on September 21st 2018, a Geneva’s Alzheimer day has been organised in the University Hospitals of Geneva (HUG), by the Swiss Association for Alzheimer’s Research (APRA). The programme could be downloaded here. During this day, a series of talks took place in the presence of the officials of Geneva’s city, among which a presentation of the Geneva Centre de la Mémoire. During his presentation, Prof. Frisoni explained the role of the center as a central point of contact for patients and researchers and gave exposure to the research projects led in Geneva. To complete this day, a concert in favor of the APRA 30th birthday was given in order to unite the different stakeholders around a festive event.

    History of World Alzheimer’s Day

    World Alzheimer’s Day (21st September) was launched in 1994 to mark the 10th anniversary of Alzheimer’s disease International (ADI), who is the umbrella international organisation of 90 Alzheimer associations around the world.  Originally, this day is part of World Alzheimer’s Month, where organisations coordinate to create global messages about dementia for the media, key stakeholders and policy makers. ADI coordinates the World Alzheimer’s Month campaign through their members, supporters and corporate partners. September 2018 marked the seventh World Alzheimer’s Month campaign. Its primary objective is to reach out to as many countries as possible, showing the global impact of dementia and promoting dementia awareness and what we can do to help support those living with the disease. The theme for this year’s World Alzheimer’s Month campaign is Every 3 seconds. Every 3 seconds someone in the world develops dementia.

     

     

     

    by

    in

    World Alzheimer’s Month is the international campaign to raise awareness and challenge the stigma that surrounds dementia. September 2018 is World Alzheimer’s Month (WAM), including World Alzheimer’s Day (WAD) on 21 September.  The 7th global WAM utilises the theme of “Every 3 seconds” to emphasise the huge global impact of dementia worldwide. As every year…

  • EPAD passes the mark of 1,000 participants for its Longitudinal Cohort Study

    EPAD passes the mark of 1,000 participants for its Longitudinal Cohort Study

    EPAD passes the mark of 1,000 participants for its Longitudinal Cohort Study

    The members of the EPAD initiative are glad to announce that its Longitudinal Cohort Study has recruited its 1,000th participant at the University of Oxford (UK) this 21st September on World Alzheimer’s Day.

    EPAD is one of the world leading dementia prevention studies, led from the University of Edinburgh. It is a Europe-wide collaboration aiming to improve the understanding of the early stages of Alzheimer’s disease. It combines knowledge and expertise from 38 European organisations from academia and industry, bringing together a wealth of experience to its activities and making it the largest ever public-private partnership in Alzheimer’s disease research. The EPAD project offers a unique platform for testing and developing preventative treatments for Alzheimer’s dementia.

    This new approach of tackling the global concern of dementia has reached a milestone where the EPAD Cohort has screened more than 1,000 research participants.

    “We want to stand with the young academics and researchers helping to find a cure or amelioration for dementia”, said a research participant in the EPAD study.

    EPAD is set up to recruit from existing cohort studies as well as clinics across Europe. EPAD has established the first pan-European register including more than 30,000 research participants aged 50 or over across the dementia risk spectrum. From this register, individuals who do not have dementia are invited to join the EPAD Cohort study, involving regular health checks, standardised tests and brain scans. All participants are followed up over several years.

    Many participants in the EPAD Cohort study may be invited to participate in the EPAD Proof of Concept Trial to test new treatments for the prevention of Alzheimer’s dementia. 

    “Recruiting from the EPAD Cohort allows us to select the right people for the drug studies who are most likely to benefit from them. We are very grateful to have reached 1,000 participants in this globally important project”, said Professor Craig Ritchie, EPAD Co-coordinator.

    Participants in the EPAD Cohort are contributing to the advancement of science around dementia prevention in 20 locations across 7 European countries (i.e. France, Italy, the Netherlands, Spain, Switzerland, Sweden and UK) and more sites to join soon.

    by

    in

    The members of the EPAD initiative are glad to announce that its Longitudinal Cohort Study has recruited its 1,000th participant at the University of Oxford (UK) this 21st September on World Alzheimer’s Day. EPAD is one of the world leading dementia prevention studies, led from the University of Edinburgh. It is a Europe-wide collaboration aiming…

  • Spotlight on the Gerontopole of Toulouse University Hospital (CHUT)

    Spotlight on the Gerontopole of Toulouse University Hospital (CHUT)

    Spotlight on the Gerontopole of Toulouse University Hospital (CHUT)

    EPAD recruited its first French research participant in September 2016 via the Gerontopole of Toulouse University Hospital (CHUT, Toulouse, France). It was the first site to open in France and the fourth in Europe and has currently recruited over 130 participants. The main mission of this institute is to develop research and prevention through multidisciplinary and health projects including Alzheimer’s disease. 

    According to Dr Pierre Jean Ousset, head of the clinical research center: “The entire team is fully committed and enthusiastic to be part of this exciting project. We are particularly proud to be among the best recruiting centers in Europe and to make a significant contribution to this unprecedented research effort”.

    We are glad to provide an overview of the hard work the CHUT team is doing for EPAD. The team is organizing events and conferences that are beneficial for the recruitment into EPAD. As an example, on June 2018, the Gerontopole of Toulouse University Hospital organised a concert honouring Claude Nougaro (popular French singer) for the EPAD research participants in Toulouse. The special event was a major opportunity to gather more than 200 attendees. The next conference on prevention and healthy aging is scheduled next month in the context of the “blue week” dedicated to seniors in France. 

    The CHUT team is pleased to share some top tips that help them to run the EPAD study efficiently in Toulouse:

    • Dedicated clinical research centre, prevention and therapeutic programs for Alzheimer’s disease and a team well-trained for research. This internal communication encompasses training of all physicians of both memory and geriatric clinics and CRA dedicated for recruitment.
    • The external communication is focused on:
      • local patient organisation (e.g. conference, recruitment brochures and posters)
      • general practitioners and memory consultation regional network
      • conferences partnership with town halls and retirement clubs
      • the organisation of periodically cultural events.
    • Use of specific tools to inform participants about the EPAD study and keep them motivated to continue participation such as a bimonthly local newsletter (8,000 subscribers), gifts, greeting cards for New Year and invitations to cultural events. 

    All these activities are ultimately improving recruitment, engagement and retention of research participants within EPAD. We are glad to see that the CHUT team is also organising bimonthly calls with the other EPAD sites in France to share its best practices. Well done to the entire team (pictured)! 

    Prof Bruno Vellas, principal investigator of the CHUT team underlines the daily commitment necessary for the success of a project. He said “we have a specific weekly meeting, with the entire team, to solve and anticipate all possible problems. This sustained effort is the unique key to success”.

     

    Pictured from the left

    • Standing: Dr Pierre Jean Ousset (head of clinical research center), Isabelle Carrié, (clinical project manager), Pr Bruno Vellas (Head of Gérontopôle), Delphine Pennetier (CRA), Florence Tavares (study nurse), Dr Françoise Lala (investigator), Dr Julien Delrieu, (investigator), Sylvie Montel (study nurse), Dr Nathalie Sastre (investigator), and Albanne Brosset (study nurse).
    • Seated: Audrey Casaux (psychologist) and Camille Coulange (psychologist).

     

    In addition, 116 new research participants have been enrolled in the EPAD Longitudinal Cohort Study (LCS) during the summer break in July and August.  Congratulations are due to VUmc (Amsterdam, Netherlands) as the team screened 19 research participants in July and August. A special mention this month goes to Peter Connelly’s team (Tayside, UK) who recruited 15 new research participants. The EPAD family of trial delivery centres grew to 20 sites in August with Brescia (Italy) enrolling its first research participant. 

     

    by

    in

    EPAD recruited its first French research participant in September 2016 via the Gerontopole of Toulouse University Hospital (CHUT, Toulouse, France). It was the first site to open in France and the fourth in Europe and has currently recruited over 130 participants. The main mission of this institute is to develop research and prevention through multidisciplinary…

  • EPAD publishes a paper on the personal utility of Alzheimer’s disease biomarkers

    EPAD publishes a paper on the personal utility of Alzheimer’s disease biomarkers

    EPAD publishes a paper on the personal utility of Alzheimer’s disease biomarkers

    Abstract:

    Many healthy volunteers choose to take part in Alzheimer’s disease (AD) prevention studies because they want to know whether they will develop dementia—and what they can do to reduce their risk—and are therefore interested in learning the results of AD biomarker tests. Proponents of AD biomarker disclosure often refer to the personal utility of AD biomarkers, claiming that research participants will be able to use AD biomarker information for personal purposes, such as planning ahead or making important life decisions. In this paper, the claim that AD biomarkers have personal utility for asymptomatic individuals is critically assessed. It demonstrates that in the absence of clinical validity, AD biomarkers cannot have personal utility and do not serve research participants’ autonomy. Over the next few years, many research groups will be confronted with participants’ preferences to learn the results of AD biomarker tests. When researchers choose to make results available upon explicit request, they should ensure adequate information provision and education, notably on the uncertain clinical significance of AD biomarker information. Routine disclosure of AD biomarkers to cognitively unimpaired individuals in research settings cannot be justified with an appeal to the personal utility of AD biomarker information.

    Read more here

    by

    in

    Abstract: Many healthy volunteers choose to take part in Alzheimer’s disease (AD) prevention studies because they want to know whether they will develop dementia—and what they can do to reduce their risk—and are therefore interested in learning the results of AD biomarker tests. Proponents of AD biomarker disclosure often refer to the personal utility of…

  • EPAD Scotland inaugural meeting sees progress and participants at heart of agenda

    EPAD Scotland inaugural meeting sees progress and participants at heart of agenda

    EPAD Scotland inaugural meeting sees progress and participants at heart of agenda

    On 29 August, EPAD’s Scottish team were lucky enough to visit the stunning University of Aberdeen campus for the inaugural EPAD Scotland conference.

    Held in the historic heart of the University, almost 80 delegates including participants, site staff and the wider Scottish EPAD team were treated to an uplifting and informative day of talks, as well as some unseasonal sunshine which saw the breakout sessions take place outside on the lawn!

    After an energetic coffee session, Professor Craig Ritchie opened the day with introductions; it was great to hear everyone describe their role in the project. This was quickly followed an overview of EPAD and its place in the future of Alzheimer’s dementia research. Craig discussed why bringing the intervention timeline forward is so important for future patients and how EPAD’s unique public-private partnership is working towards this goal.

    “Where we start will not be where we end in EPAD, we are learning a lot.” Professor Craig Ritchie

    Professor Ritchie also announced that we now have the first tranche of data from our research participants and are taking the responsibility we have to get the best science out it, seriously.

    Our research participants were firmly at the heart of the event, and next up saw Brian and Eileen, two of our participants panel members, take to the floor for a discussion. Both are hugely enthusiastic about the project and their part in it, and it was a joy to hear their insights. Brian and Eileen also had the chance to watch the video interviews they participated in at the 2018 General Assembly. It was an emotional moment for them and everyone in the room. You can watch the new research participant interview videos on EPAD’s YouTube channel.

    A quick and lively coffee break and we were back in the room to hear from Craig Ritchie on the Longitudinal Cohort Study (LCS) taskforce. This included the impressive stats on our recruitment progress and the news that Scotland is doing very well in the recruitment stakes – we are a competitive bunch!

    It was interesting to hear from NHS Grampian’s Catriona Murray, an Advanced Nurse Practitioner who manages the lumbar puncture procedure required of research participants. An obstacle for many potential participants, Catriona explained how well trained and professional her team are, providing reassurance to many of the participants present. She also discussed why cerebrospinal fluid is important for EPAD’s biomarkers analysis and the different positions that participants can take to make collection easier, along with some post-procedure recovery tips.

    Sarah Gregory, Study Coordinator at EPAD’s lead site situated at the University of Edinburgh’s Centre for Dementia Prevention then introduced what they have learned about research recruitment and retention thus far using the Generation Scotland cohort and the PREVENT Dementia study. The team is now gearing up towards recruiting from the newly launched Scottish Brain Health Registry and believe that it will be of benefit to EPAD’s recruitment strategy in Scotland.

    “The next 12 months for our site will be spent focussing on getting ready for the Proof of Concept trials and expanding the success of the participant panel across Scotland.” Sarah Gregory

    Sarah also outlined how PrePAD Velocity is not only boosting recruitment, but further enriching the LCS with prodromal Alzheimer’s disease research participants, thus ensuring that the LCS can serve as a successful readiness cohort for the first PoC appendix.

    NHS’s Greater Glasgow & Clyde’s Shona McKay then delivered a fantastic presentation on hard to reach groups. With EPAD recruiting almost exclusively from socio-economic groups at the top end of the scale in Glasgow, Shona asked what we should be doing to reach out to and engage those groups which are less easy to communicate with in order to drive an uptake in participation in deprived areas where elderly people are at an increased risk of developing dementia.

    “EPAD’s longitudinal design lends itself well to addressing and engaging seldom heard groups across socio-economic groups.”  Shona McKay

    This presentation sparked some interesting discussions over lunch, which we were lucky enough to be able to eat outside. It was also the perfect weather to conduct an outdoor interview with Craig Ritchie, project co-coordinator and native Aberdonian, which you can watch here.

    The afternoon session focused around workshops, giving everyone present an opportunity to give their thoughts on how EPAD’s recruitment, retention and engagement strategies are working, and give ideas and feedback for the team to take forward. These breakout sessions were hugely valuable and the outputs from these have been collated and shared with the relevant work package teams to progress.

    Dr Kristy Draper picked the afternoon sessions back up with her update on the proof of concept (Poc) trials. With the PoC platform now launched and attracting a great deal of interest from the pharmaceutical sector, it was encouraging to see the how the consortium’s work is coming together to support drug development and provide trial-ready cohorts to proof-of-concept trials.

    The meeting was brought to a close by Professor Alison Murray, the Roland Sutton Chair of Radiology at the University of Aberdeen, who leads research into cognitive resilience within the Generation Scotland subsample of Aberdeen Children of the 1950s. Utilising cognitive tests routinely used in Aberdeen schools in the 1950s and 1960s as a starting point, Professor Murray demonstrated how the effects of childhood IQ have an impact on neurological impairment in later life, with early education and mid-life occupation contributing to greater cognitive resilience.

    Professor Murray’s talk was a fascinating end to an overall fascinating day. I’m pleased to say that this is just the first of what we hope will become an annual EPAD Scotland Conference. If this first conference is anything to go by, the EPAD Scotland team is set to benefit year after year.

    by

    in

    On 29 August, EPAD’s Scottish team were lucky enough to visit the stunning University of Aberdeen campus for the inaugural EPAD Scotland conference. Held in the historic heart of the University, almost 80 delegates including participants, site staff and the wider Scottish EPAD team were treated to an uplifting and informative day of talks, as…

  • EPAD exhibits at AAIC in Chicago

    EPAD exhibits at AAIC in Chicago

    EPAD exhibits at AAIC in Chicago

    We are pleased that for the first time during our project, we exhibited the EPAD study at the Alzheimer’s Association International Conference (AAIC) held on 22-26 July. With its neat white walls and signature green colours, the EPAD booth at the start of the exhibition area at this year’s record size AAIC in Chicago stood out not only for the constant stream of attendees stopping by at the booth but also for acting as a great meeting area for catching up with the many current and future EPAD collaborators.

    We are delighted that during the four day conference, around 400 people stopped by at the EPAD booth to hear about the study and exchange ideas. In addition to the interest received from the attendees stopping by at the booth, the EPAD leadership used the AAIC as a fantastic opportunity to manage a back-to-back diary with an intense four days of meetings with other world experts on Alzheimer’s disease prevention.

    At AAIC 2018, the aim of the EPAD booth was not only to introduce the EPAD study and learn from our academic and industry partners, but crucially, to showcase the EPAD PoC trial platform. We are very excited about the many conversations had at the booth and the enthusiasm and support shown for our bold innovative platform. Adaptive trial design, placebo sharing between study arms, cost-effectiveness of using a readiness cohort and a low screen failure rate were only some of the topics frequently brought up over discussions at the booth.

    On the second evening of the AAIC, we held a satellite symposium dedicated to the EPAD PoC trial to allow for presentations and a question and answer session from interested intervention owners. The AAIC is notoriously packed with tremendous sessions running late into the evening and as such, we are very grateful to all who chose to attend the EPAD PoC trial platform launch. At the event, the EPAD leadership presented the uniqueness of the platform and addressed a great set of questions from the audience. It was encouraging to see and hear a lot of interest for the EPAD PoC from our key industry contacts.

    We were thrilled to also see EPAD mentioned at numerous talks during the AAIC. Notably, Miia Kiviepelto highlighted the EPAD study as one of the world leading initiatives in Alzheimer’s dementia prevention during her wonderfully captivating plenary session. 

    Finally, as the EPAD-booth debut at AAIC draws to a close, we want to thank all the Epadistas who made our AAIC 2018 big splash possible by working diligently, across time-zones, to create high quality content in the form of a brochure and a new updated EPAD website with a new informative section for research participants. This hard work and attention to detail was picked up by many who stopped by at the booth. 

    The Alzheimer’s community is painfully aware that there have been no major breakthroughs in interventions over many years. We have learned from the past and believe our innovative trials platform is different. The EPAD mentality starts with small things like only purchasing merchandise in sustainable, recycled cotton and recycled plastics, finishing with ground breaking complex adaptive trials design. We are truly thankful to all the individuals at this years AAIC who really blew the wind in our sails by acknowledging our innovative approach to preventing Alzheimer’s dementia and standing by our ideas of changing the future of clinical trials in Alzheimer’s disease.

    We look forward to continuing the conversations at next years AAIC in Los Angeles.

     

     

    by

    in

    We are pleased that for the first time during our project, we exhibited the EPAD study at the Alzheimer’s Association International Conference (AAIC) held on 22-26 July. With its neat white walls and signature green colours, the EPAD booth at the start of the exhibition area at this year’s record size AAIC in Chicago stood…

  • Interview with Johannes Streffer

    Interview with Johannes Streffer

    Interview with Johannes Streffer

    What is your current role in EPAD?

    I have recently joined the executive committee of EPAD. The executive committee is suggested to follow up on the project to see if everything is performed as planned and help coordinate between different ongoing activities. As well, it is a group that can react to new developments e.g. if new partners want to join. The group is composed by representatives from different academic and industry partners in EPAD.
    As a contributor from a pharmaceutical company, I am bringing my experience in early drug development into the group, with a specific focus on studying very early stages of Alzheimer’s disease, which has specific challenge in identification of study participants and clinical as well as biomarker measures.

     

    What did you do prior to joining EPAD?

    I have very recently been co-leading EMIF-AD as a subproject of IMI EMIF (European Medical Information Framework). This project targeted the understanding of very early stages of Alzheimer’s disease. Important questions where (I) how can we identify subjects that will later develop dementia very early (e.g. before they have clinical symptoms of the disease, (II) are there markers that predict faster (or slower) progression of symptoms, (III) how can we best coordinate between different centers and identify subjects in existing databases. This last activity was actually a very important activity supporting EPAD as well.

     

    Tell us a bit about the institution/company/organisation you work for.

    UCB biopharma is a mid-size Belgium pharmaceutical company, with a specific interest in therapies directed towards immunologic or neurologic disease. We are aiming at creating value for patients through novel therapeutic approaches. My training was as a medical doctor and I am specialized as Neurologist and Psychiatrist. The group I am heading is responsible for the first clinical studies in human volunteers and patients with the selected diseases. The methodologies are the precise same methodologies that are used in projects like EPAD or EMIF-AD.

     

    What are your expectations from the EPAD project

    I am very passionate about EPAD, as I will that the novel approach to Alzheimer disease studies. These studies need a broad collaboration and engagement of different stakeholders (e.g. patient organization, academic investigators, clinical research organizations and pharmaceutical industry).
    EPAD is very well fitting in this frame and bringing all the right people to the table. The engagement and spirit in the group is wonderful, so I feel we have all ingredients for a successful projects and make a significant contribution towards a successful treatment for Alzheimer’s disease.

    by

    in

    What is your current role in EPAD? I have recently joined the executive committee of EPAD. The executive committee is suggested to follow up on the project to see if everything is performed as planned and help coordinate between different ongoing activities. As well, it is a group that can react to new developments e.g.…

  • Interview with Saira Ramasastry

    Interview with Saira Ramasastry

    Interview with Saira Ramasastry

    What is your current role in EPAD?

    I am a member of Work Package 7 focusing on business and sustainability for the EPAD project. We are conducting analysis pertaining to markets, stakeholders, incentive, IP and financial strategy. Ultimately, we are collaborating with the entire consortium to create a feasible business plan for the EPAD machine. This is incredibly exciting, as EPAD has created so much value beyond what we anticipated at the beginning of the project.

    What did you do prior to joining EPAD?

    I have worked in life sciences advisory for over 20 years. Before joining EPAD, I was an investment banker with Merrill Lynch where I helped build the biotechnology practice and was responsible for emerging company coverage for a decade. After Merrill Lynch, I started an independent impact firm with a focus on the neuroscience space – the world’s number one unmet medical need.  Finding solutions for patients in need will take many key stakeholders coming together, which is one of the many amazing aspects of EPAD.

    Tell us a bit about the institution/company/organisation you work for.

    I am honored to be a part of the Synapse team on EPAD. Synapse is a firm specialized in the high quality management of complex research and development projects in the biomedical sector. Synapse partners with national and international organisations, both public and private, to catalyze solutions that need interdisciplinary collaboration. Synapse delivers a business focus to this important IMI project.

    What are your expectations from the EPAD project?

    We have gathered the world’s experts across every discipline to pioneer a better research and development model for disease modifying treatments for Alzheimer’s dementia. My greatest hope is that we will make an impact, and help the patients who are waiting. I know that everyone in EPAD is united in this mission.

    by

    in

    What is your current role in EPAD? I am a member of Work Package 7 focusing on business and sustainability for the EPAD project. We are conducting analysis pertaining to markets, stakeholders, incentive, IP and financial strategy. Ultimately, we are collaborating with the entire consortium to create a feasible business plan for the EPAD machine.…

  • Craig Ritchie presents EPAD at the 3rd UK Dementia MRI conference

    Craig Ritchie presents EPAD at the 3rd UK Dementia MRI conference

    Craig Ritchie presents EPAD at the 3rd UK Dementia MRI conference

    The 3rd UK Dementia MRI conference took place at the Howard Conference Centre, Downing College in Cambridge from 5 to 6 July. The event attracted PhD students, junior post-doctoral and clinical researchers and offered an interactive session for junior scientists to present their work.

    The objectives of the conference were:

    • To discuss the state-of-the-art multimodal MRI techniques.
    • To communicate/present novel MRI techniques that allow imaging of white matter microstructure and highlight the utility of these techniques in detection of early dementia pathology.
    • To discuss extension of imaging research into the preclinical space.
    • To discuss novel ligand-PET work.
    • To discuss the role of bioinformatics in imaging research.
    • To discuss issues relating to multi-site imaging.
    • To stimulate new research collaborations among dementia researchers in the UK.

    On 6 July, Craig Ritchie did an oral presentation entitled “EPAD: the European Prevention of Alzheimer’s Disease study”. He presented an overview of the project, the progress done so far and highlighted the national and international collaborations. You can watch his presentation here.

    by

    in

    The 3rd UK Dementia MRI conference took place at the Howard Conference Centre, Downing College in Cambridge from 5 to 6 July. The event attracted PhD students, junior post-doctoral and clinical researchers and offered an interactive session for junior scientists to present their work. The objectives of the conference were: To discuss the state-of-the-art multimodal…