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Philippe Amouyel, JPND Milan Nov. 2013

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A presentation delivered by Philippe Amouyel, Chair of JPND Management Board, at the Alzheimer meeting in Milan, Italy on 22nd November, 2013

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Philippe Amouyel, JPND Milan Nov. 2013

  1. 1. JPND e Piano Nazionale per le Demenze in Francia Professor Philippe Amouyel Nov. 22nd, 2013, Milan
  2. 2. French National Plan for Alzheimer’s Disease and Related Disorders        A major national cause A major public health challenge Unprecedented mobilisation One mission: Prof. Joël Ménard Over 100 experts from all fields met for 3 months at the end of 2007 Announced on 1st February 2008 Scheduled from 2008 to 2012
  3. 3. Plan Alzheimer 2008-2012 Solutions explorer and organizer Health 3 axis Solidarity Research Cure 3 objectives 3 targets Take care know the disease and find a medical treatment look after and increase quality of life for patients and carers Disease Respect guarantee the dignity of the person with Alzheimer ’s and ethics of this key social issue Family Person with caregiver Alzheimer’s Let healthy ageing have a future 3
  4. 4. A major investment     3 axes 11key measures 44 specific aims 1.6 billion euros over 5 years Social support  Medical support  Research segment  €1.2 billion €200 million €200 million
  5. 5. Three axes    Developing our understanding of the disease Improving the quality of life for patients and careers Mobilizing society for the fight against dementia by developing a voluntary approach and synergisms http://www.plan-alzheimer.gouv.fr/-44-measures-.html
  6. 6. Personal pathway for a person with dementia Alzheimer’s plan : 2013, March DIAGNOSING TAKING CARE Home Home rehabilitation: General Practitioners 423 spécialized teams Respite and support 134 platforms Persons with dementia and caregivers 12,500 new day care places MAIA •148 MAIA (+50) •157pilots and case managers Training for professional and caregivers 18,600 trained caregivers, by 1,730 sessions +2,078 psychomotricians ou ergotherapeuts 2,700 ASG (specialized geriatric auxillary nurses) Specialists Out of Home 469 Memory Clinics specialized structures ( 500 sites) • 28 Referal and Research Memory Clinics Hospital : 78 rehabilitation units • 1 Center for EO Alzheimer patients: 27correspondants + 37scheduled •70 liberal neurologists Nursing Homes 1092 « Pôles d’activités » (PASA) 154 « Unités d’Hebergement Renforcées »(UHR)
  7. 7. New structures adapted to disease severity In hospital rehabilitation units 800 700 600 500 400 300 200 100 0 Networks for integrated care of UCC AZ people MAIA Day and night units for patients UHR with BPSD ESA Reinforced home support teams PASA Day units for occupational therapies AJ/PLT 2008 2009 Number of new day care centers and multiservice respite platforms 2010 2011 2012 16000 Number of newly trained informal caregivers and health professionals ( case managers, care assistants for the elderly, ergotherapeuts, pschomotricians) 14000 25000 12000 20000 10000 Nouveaux professionnels aidants plateformes 15000 AJ 8000 6000 10000 4000 5000 2000 0 2008 2009 2010 2011 2012 0 2008 2009 2010 2011 2012
  8. 8. 15 Specific research measures        21 Creating a foundation for scientific cooperation to stimulate and coordinate scientific research 22 Developing clinical research of Alzheimer's disease and improving evaluation of non-drug therapies 23 Doctoral and post-doctoral grants 24 New assistant surgeon and hospital teaching assistant positions 25 Research in human and social sciences 26 Support for research groups working on innovative approaches 27 Support for methodological research groups in human and social sciences
  9. 9. 15 Specific research measures         28 Creation of a research centre in automatic image processing 29 Studying large patient populations (cohorts) with long-term monitoring 30 High-throughput genotyping 31 Experimental models 32 Training in clinical epidemiology 33 Developing links between public research and industry 34 Setting up epidemiological surveillance and follow up 42 Making the fight against Alzheimer's disease a priority for the European Union during the French presidency
  10. 10. Tools = Foundation for Scientific Cooperation     Simplify research operations Ensure transparency for the use of funds Combine public and industrial-sector capabilities on a common national research objective International SAB
  11. 11. Social €1.2 billion Medical €0.2 billion Research €0.2 billion 5 years (2008-2012) 3 axes 11 key measures 47 initiatives A new governance: project management Research 200 millions € 15 research initiatives Stimulate Coordinate To increase researcher To optimize the research resources critical mass Structure To offer dedicated tools Collaborate at the international level SHS Cohorts 27 countries Common Research Strategy Clinical biology Epidemiological Therapeutical research research Clinical research SHS research www.jpnd.eu Twitter: @JPNDEurope
  12. 12. A Global Challenge Requires Global Collaboration Map of Scientific Collaborations between world cities (2005-2009), Oliver H. Beauchesne, 2011
  13. 13. A compartmentalised ERA Public Funding for Research (Source : ERA Key Figures 2007, EC ) 100000 90000 80000 Mio Euro 70000 60000 50000 40000 30000 20000 10000 Japan China Malta Latvia Cyprus 13 United States European Commission - DG Research - Coordination of national programmes Estonia Lithuania Luxembourg Bulgaria Slovakia Slovenia ROmania Hungary Czech rep. Greece Poland Ireland Portugal Denmark Austria Finland Belgium Sweden Netherlands Spain Italy EU Community G. Clarotti - JP - 03-10 UK France Germany 0
  14. 14. A compartmentalised ERA Public Funding for Research (Source : ERA Key Figures 2007, EC ) 100000 EU27 + EC 90000 80000 Mio Euro 70000 60000 50000 40000 30000 20000 10000 Japan China Malta Latvia Cyprus 14 United States European Commission - DG Research - Coordination of national programmes Estonia Lithuania Luxembourg Bulgaria Slovakia Slovenia ROmania Hungary Czech rep. Greece Poland Ireland Portugal Denmark Austria Finland Belgium Sweden Netherlands Spain Italy EU Community G. Clarotti - JP - 03-10 UK France Germany 0
  15. 15. A compartmentalised ERA Public Funding for Research (Source : ERA Key Figures 2007, EC ) 100000 90000 80000 Mio Euro 70000 EU27 + EC Transnational Collaboration in EU 27: 10 to 15 % Competitive Federal Funding in US : 85 to 90 % 60000 50000 40000 30000 20000 10000 Japan China Malta Latvia Cyprus 15 United States European Commission - DG Research - Coordination of national programmes Estonia Lithuania Luxembourg Bulgaria Slovakia Slovenia ROmania Hungary Czech rep. Greece Poland Ireland Portugal Denmark Austria Finland Belgium Sweden Netherlands Spain Italy EU Community G. Clarotti - JP - 03-10 UK France Germany 0
  16. 16. Research efforts are fragmented Investing more than the US Ocean energy Concentrated solar thermal Nuclear fusion Pollution and environmental protection CO2 capture and storage Photovoltaic nanotechnology’s potential risks Biomass - Bioenergy Hydrogen and fuel cells Investing as much as the US Agriculture Production and Technology Wind energy Polar programs Nanotechnologies Geothermal Grids electricity Cancer Space Information and communication technology Investing less than the US Civil security Biotechnologies Brain diseases Low coordination/ High fragmentation Dementia - Alzheimer Industrial biotechnology Medium Rare diseases Low fragmentation / High coordination
  17. 17. Joint Programming - a definition European countries engaging • voluntarily and on a variable geometry basis to tackle a major societal question • in the definition, development and implementation of a common strategic research agenda • based on a common vision on how to address major societal challenges.
  18. 18. We cannot tackle neurodegenerative diseases by acting as single countries JPND is a global research initiative led by EU countries, with 27 participating EU Member states Associated countries Third countries Increasing coordination of national research programmes to improve impact and effectiveness Albania Austria Belgium Canada Croatia Czech Republic Denmark Finland France Germany Greece Hungary Ireland Israel Italy Luxembourg Netherlands Norway Poland Portugal Slovakia Slovenia Spain Sweden Switzerland Turkey United Kingdom
  19. 19. JPND brings together…. • Researchers (Basic, Clinical, Healthcare/Social) • National Funding Bodies • National Research Strategies and Investments • Current JPND strategy: • To increase coordinated investment in ND research aimed at finding causes of disease, developing cures, and identifying appropriate ways to care for those with neurodegenerative diseases • Immediate JPND goals: • To add value to national investments through coordinated action • To encourage the development of national research strategies in ND • To engage in partnership to reach the full potential of JPND
  20. 20. European Research Landscape • Greatest amount of funds are available through national government budgets: • • 2011 Total ND Research Funding: • Basic research: • Clinical research: • Healthcare/Social Research: 1.621 Billion* 1.362 Billion 183 Million 76 Million JPND Research Strategy Goals • • • • To develop new treatments and preventive strategies To improve health and social care approaches To raise awareness and de-stigmatise neurodegenerative disorders To alleviate the economic and social burden of these diseases * Alzheimer’s disease and other dementias (AD) Parkinson’s disease (PD) and PD-related disorders Prion disease Motor neurone diseases (MND) Huntington’s disease (HD) Spinocerebellar ataxia (SCA) Spinal muscular atrophy (SMA)
  21. 21. DEFRAGMENTATION - WHAT JPND IS ALL ABOUT STRATEGIC RESEARCH AGENDA ALIGNMENT OF EU COUNTRIES ON COMMON RESEARCH GOALS
  22. 22. Organisation Management Board • • • 27 countries represented Members mandated to act Chair Philippe Amouyel - France Executive Board • • • • Vice-Chair Adriana Maggi - Italy Rob Buckle - UK Mogens Horder – Denmark Marlies Dorloechter - Germany Steering Committee • Executive Board + Enda Connolly - Ireland + Edvard Beem - Netherlands Scientific Advisory Board • 18 Members, chosen for scientific excellence and competence JPND currently partly-supported by FP7-JUMPAHEAD (GA. 260774)
  23. 23. JPND Research Basic Clinical PARTNERSHIP • 27 JPND Members • Member States • Assoc. Countries Societal Needs • Third Countries • Eur. Commission • Industry • Public and Users Healthcare/Social OUTCOMES ACTIONS • Common Strategy • Transnational Calls • Creative research Alignment Actions • (Idea Generation) National Plans • Communication and Dissemination • New treatments + preventive strategies • Innovation Improved health + social (Idea Implementation) care approaches • De-stigmatize ND • Alleviate economic and social burden
  24. 24. How can JPND reach its goals? • Alignment of research in Member Countries • Partnership with the European Commission • Partnership with Industry • Partnership with other international organisations • Involvement of Patients and Public
  25. 25. JPND Actions to date • Common European Strategy • Phase I Implementation (2012-2014) • Annual Transnational Calls for Proposals • Alignment Actions • National Plans and Strategies • Communication + Dissemination
  26. 26. JPND Annual Calls for Proposals Year Total Fund Area No. of Projects with Italian Partners 2011 €16M Optimization of biomarkers and harmonization of their use 4 4 2012 €18M Risk Factors 5 3 2012 €11M Evaluation of Healthcare 6 4 Centres of Excellence in Neurodegeneration (CoEN) • 7 participating Italian Centers • First call (2011) for € 6M – 8 Projects • Second call (2012-13) for € 8M – 5 “Pathfinder” projects
  27. 27. JPND-supported projects • www.jpnd.eu
  28. 28. Early December 2013
  29. 29. Online Partnering Tool
  30. 30. Online Partnering Tool Register Research Group Create Personal Profile
  31. 31. Online Partnering Tool Register proposal Idea and form consortia online
  32. 32. Alignment Actions • Action Groups have begun in priority areas: • Longitudinal Cohort Studies • Animal and Cell Models • Assisted Living Technologies • Palliative Care • Patient and Public Involvement in Research
  33. 33. Aligning research strategies • Most JPND countries • • • Those who do, take different approaches • • • • No national roadmap No identified priority actions in the field of ND research Specific research programmes National plans targeted to an individual disease (e.g. Dementia) National plans comprising research, service delivery, or both Since deciding to participate in JPND….. • Denmark, Finland, Italy, Ireland working towards developing SRAs • Specific JPND actions aimed at encouraging countries to develop national research strategies in ND
  34. 34. Emerging national JPND-related activities • The Netherlands • Research a major theme as part of National Deltaplan for Dementia “…. the Deltaplan will follow closely the JPND strategic research agenda and will strengthen the international position of the Netherlands for both research and industry” Edith Schippers, Minister for Health, Welfare and Sport • United Kingdom • David Cameron’s “Prime Minister’s challenge on dementia” includes specific references to continued support for COEN and JPND research • Ireland • National SRA developed to inform participation in JPND • Researchers using participation in 2011 JPND Biomarkers call to initiate a national network in biomarkers for Alzheimer’s and Parkinson’s
  35. 35. Next Challenges • To continue implementation beyond phase I • To partner with the European Commission • To partner with Industry • To ensure JPND sustainability
  36. 36. Keep up to date • Visit the JPND website: • http://www.neurodegenerationresearch.eu • http://www.jpnd.eu • Register on the Partnering Tool • Sign up to the JPND News Feeds • E-mail us: secretariat@jpnd.eu • Follow us on Twitter: @JPNDEurope

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