Alzheimer Europe Conference Berlin, 2-4 October Special Symposium 4 October, , Room II. Eli Lilly and Company

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1 ENGAGING WITH PATIENT ORGANISATIONS WITHIN IMI CONSORTIA TO INFORM QUALITY, RELEVANCE AND VALUE IN ALZHEIMER S RESEARCH INSIGHTS FROM MOPEAD, EPAD AND ROADMAP Alzheimer Europe Conference Berlin, 2-4 October 2017 Special Symposium 4 October, , Room II Eli Lilly and Company

Agenda 4 October 2017 Special Symposium 12.45 13.

2 Agenda 4 October 2017 Special Symposium , Room II Moderator Jean Georges Mercè Boada 6 MOPEAD: Improving timely diagnosis through citizens participation Craig Ritchie 8 EPAD: Pioneering a novel approach to clinical trials of drugs designed to prevent Alzheimer s dementia Catherine Reed 10 ROADMAP: Best use of Real World Evidence to address specific healthcare challenges

Welcome from the chair D ear colleagues and friends, As Executive Director of Alzheimer Europe, I am delighted to welcome you to this interesting and interactive symposium to discuss the role of

3 Welcome from the chair D ear colleagues and friends, As Executive Director of Alzheimer Europe, I am delighted to welcome you to this interesting and interactive symposium to discuss the role of patient organisations in Alzheimer s research in general and in the three exciting and innovative IMI-funded research projects MOPEAD, EPAD and ROADMAP which Alzheimer Europe is happy and honoured to be a partner of. Our distinguished faculty are experts in Alzheimer s disease coming together to share their perspectives and proposed solutions to the challenges in the Alzheimer s disease continuum. In their introductory presentations, they will highlight the ambitious objectives of the projects they lead: MOPEAD (Models of Patient Engagement in Alzheimer s Disease) presented by Dr Mercè Boada, aims to improve timely diagnosis through citizens participation. EPAD (European Prevention of Alzheimer s Dementia) presented by Prof. Craig Ritchie is pioneering novel approaches to clinical trials in Alzheimer s disease. ROADMAP (Real world outcomes across the Alzheimer s disease spectrum for better care: multi-modal data access platform) presented by Dr Catherine Reed will use real world evidence to assess the value of new medicines. medications. We hope to engage our audience in an active discussion on the involvement of patient organisations in these research projects to ensure that the views of people with dementia and their carers is fully involved in the decision making process alongside payers, regulators and healthcare providers. We look forward to your active participation. With best wishes, Jean Georges 4 5

4 Mercè Boada Chief Medical Officer Fundació ACE. Barcelona Alzheimer Treatment & Research Center MOPEAD: Improving timely diagnosis through citizens participation Learning objectives How relevant it is to change the current diagnostic paradigm. The challenges posed by the strategies proposed in MOPEAD. The involvement of both society and researchers in awareness and dissemination. Mercè Boada s profile Neurologist (Universitat de Barcelona, 1972). PhD in Founder and medical director of Fundació ACE She was a former President of Catalan Neurology Association ( ). From 1996 to 2001 she was advisor on the bioethics committee of the Catalan Government, coordinator for the design of a new care model for people with cognitive impairment, and President of the committee for the Pharmacological Treatment for Alzheimer s disease of the Catalan Government. Member of the Executive Committee of the European Alzheimer s Disease Consortium (EADC) and founder member of the Mediterranean Alzheimer Alliance (MAA).Leader of several projects funded by Spanish, Catalan, European Union and private institutions: AES, H2020, EFSD, ERA-NET, IMI2, Fundació La Caixa. To date, she has led 128 clinical trials as well as being author of more than 150 articles, 25 book chapters and 12 books of medical outreach. 6 7

Craig Ritchie Professor of the Psychiatry of Ageing Centre for Clinical Brain Sciences Director, Centre for Dementia Prevention Associate Director of the Wellcome Trust Clinical Research Facility

critical element of success for dementia prevention research. To understand how EPAD hopes to improve the likelihood of succesful drug development for dementia prevention.

He is a leading authority on Clinical Trials in Dementia and has been senior investigator on over 40 drug trials of both disease modifying and symptomatic agents for that condition.

5 Craig Ritchie Professor of the Psychiatry of Ageing Centre for Clinical Brain Sciences Director, Centre for Dementia Prevention Associate Director of the Wellcome Trust Clinical Research Facility (Edinburgh) EPAD: Pioneering a novel approach to clinical trials of drugs designed to prevent Alzheimer s dementia Learning objectives To understand how working with research participants is a critical element of success for dementia prevention research. To understand how EPAD hopes to improve the likelihood of succesful drug development for dementia prevention. To understand why a readiness cohort helps deliver on better trial outcomes. Craig Ritchie s profile Prof Ritchie is Professor of the Psychiatry of Ageing at the University of Edinburgh. He is a leading authority on Clinical Trials in Dementia and has been senior investigator on over 40 drug trials of both disease modifying and symptomatic agents for that condition. He is leading the PREVENT Dementia project; a major initiative in the UK and Ireland which will identify mid-life risks for later life dementia and characterize early changes of neurodegenerative disease through imaging, genetic, cognitive and biomarker analyses. He also leads the EPAD (European Prevention of Alzheimer s Dementia) Consortium which is an IMI funded, 5-year grant application to establish a Pan-European network of Trial Delivery Centers with supporting infrastructure to undertake a perpetual, Proof of Concept multi-arm trial secondary trial for secondary prevention of Alzheimer s dementia. 8 9

Catherine Reed Principal Research Scientist ROADMAP: Best use of Real World Evidence to address specific healthcare challenges Global Patient Outcomes/Real World Evidence

What are the specific challenges for RWE in AD and how will ROADMAP address these challenges? How can individuals contribute to ROADMAP?

She has been the scientific lead on a number of large prospective observational studies most recently to estimate the societal cost of Alzheimer s disease in European counties

6 Catherine Reed Principal Research Scientist ROADMAP: Best use of Real World Evidence to address specific healthcare challenges Global Patient Outcomes/Real World Evidence (GPORWE) Eli Lilly and Company Ltd Learning objectives What is Real World Evidence (RWE) and how is it used in current healthcare practice? What are the specific challenges for RWE in AD and how will ROADMAP address these challenges? How can individuals contribute to ROADMAP? Catherine Reed s profile Dr Catherine Reed is a principal research scientist at Lilly, where she has been working in health outcomes and real world evidence for the last 15 years. She has been the scientific lead on a number of large prospective observational studies most recently to estimate the societal cost of Alzheimer s disease in European counties leading to numerous publications on understanding the cost and caregiver impact of this disease. She gained her doctorate from the University of London (Institute of Psychiatry) and has a Masters in Epidemiology (London School of Hygiene and Tropical Medicine)

7 YOUR NOTES

8 These projects have received support from the EU / EFPIA / Innovative Medicines Initiative (1 and 2) Joint Undertakings grants: No (MOPEAD), No (EPAD), No (ROADMAP).

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Making dementia a European priority

Making dementia a European priority Glasgow 1 June 2015 Jean Georges, Executive Director Alzheimer Europe 36 associations in 31 countries 2 Paris Declaration Adopted by Annual General Meeting in Paris