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AE organises its third Alzheimer’s Association Academy

Tuesday 05 December 2017

On 5 and 6 December 2017, Alzheimer Europe (AE) hosted its third annual Alzheimer’s Association Academy. Participants included 24 representatives from AE member organisations; 4 company representatives and 4 AE staff members. There were 14 expert speakers including a representative of the European Working Group of People with Dementia (EWGPWD and topics were defined based on a survey of participants at the 2016 Academy and AE members.

The first day began with a session on “The role of biomarkers in the diagnosis of Alzheimer’s disease/dementia” and was moderated by Charles Scerri, from the Malta Dementia Society. This session included presentations by Mariania Boccari from the University of Geneva, Switzerland, Pierre Krolak-Salmon, from the Institut du Viellissement, Lyon, France and Richard Milne from the University of Cambridge, UK. This interactive session built on the presentations provided at the European Parliament lunch debate earlier in the day on “Improving the diagnosis of Alzheimer’s disease thanks to European research collaboration. During their presentations the speakers addressed the key questions: How have biomarkers impacted the diagnosis of Alzheimer’s disease/dementia? How do national organisations communicate about the changing definition of Alzheimer’s disease/dementia? What are the implications for clinical practice of new research criteria? How can Alzheimer’s association support communication activities on the meaning of biomarkers and risks of developing dementia.

The second session of the day was on “EU research collaboration on timely diagnosis – Opportunities for collaboration with Alzheimer’s associations” and was moderated by Iva Holmerová, Chairperson, Alzheimer Europe This session included presentations by Laura Campo from Lilly, who presented the key aims of the MOPEAD (Models of patient engagement in Alzheimer’s disease) project and Isadora Alves (VUMC, Netherlands) who presented the key aims of AMYPAD (Amyloid Imaging to Prevent Alzheimer’s disease) project. Both speakers illustrated how the projects can support earlier diagnosis of Alzheimer’s disease and dementia.

Day two of the Academy began with a session on “Patient and public involvement in dementia research” which was moderated by Jean Georges, Executive Director, Alzheimer Europe. This session included presentations by Helen Rochford Brennan Chairperson of the EWGPWD and Dianne Gove, Director Project, Alzheimer Europe who presented “The experience of Alzheimer Europe in involving the European Working Group of People with Dementia in Research. Wendy Werkman from Alzheimer Nederland, Netherlands presented “The experience of Alzheimer Nederland in involving carers in research” and Stina Saunders from the University of Edinburgh, UK presented “The participant panel in EPAD (European Prevention of Alzheimer’s dementia) as a model of involving research participants in research”. All speakers helped give delegates a deeper understanding of how Alzheimer associations can involve people with dementia and carers in research projects and how research can benefit from this input.

The second morning session, was on Real World Evidence in dementia research and was moderated by Chris Bintener from Alzheimer Europe. The session focused on the ROADMAP project. Catherine Reed from Lilly, UK presented “The aims of the ROADMAP (Real world outcomes across the Alzheimer’s disease spectrum for better care: multi-modal data access platform) project”. Marieke Dekker from the Medicines Evaluations Board, Netherlands presented “The use of real world data and evidence in regulatory and health technology assessments” and Andrew Turner from the University of Oxford, UK presented “Ethical issues raised by big data and real world evidence projects”. This session introduced the aims and objectives of the ROADMAP project and showed how real world data can support the development process of new medicines and looked at the question of how do big data projects address ethical issues.

The final session of the Academy was moderated by Vanessa Challinor, Alzheimer Europe It was dedicated to EU programmes and their relevance for Alzheimer associations. The first two speakers were from the European Commission, Andor Urmos presented “Funding opportunities for national activities from the European Regional Development Fund and the European Social Fund” and Isabel de la Mata presented “The European Solidarity Corps and opportunities for national Alzheimer’s associations”.  The final speaker of the Academy Christine Marking from Eurocarers presented “The European Social Pillar and its implications and relevance for carers of people with dementia”. This session provided an opportunity for national Alzheimer Associations to learn more about a number of key European programmes and initiatives and how these can support national organisations and carers.

The two-day Academy was a highly interactive event, with lots of time for questions after presentations and plenty of lively and thought-provoking discussion. Given the success of its Academies, AE plans to organise a fourth in December 2018.

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