Joint Programming in Neurodegenerative Disease Research (JPND) Coordinating approaches to research across the globe Kathleen.dhondt@ewi.vlaanderen.be
What is Joint Programming? Member States-led in Europe to address Grand Challenges Coordination of national research programmes increase the impact and effectiveness of research efforts Source : Communication from the Commission to the European Parliament, the Council, the European Economic and social committee and the Committee of the Regions toward Joint Programming in Research : Working together to tackle common challenges more effectively - COM(2008) 468 final, Brussels
Major societal Grand Challenges Energy Climate Change Food & Health Neurodegeneration
Overcoming barriers Fragmented Research Non-concerted National Funding Duplication Shared research exists via EC (< 5% of total EU budget)
Neurodegenerative diseases challenge 16% of the European population is over 65 by 2030 25% NDs affect over 7 million people in Europe: x2 every 20 years Costs: 130 billion per annum Chronic: 2-10 years affecting at least 1-2 others health care cost burden Cases / 100 40 30 20 10 Dementia Stroke Parkinson's 0 60 70 80 90 100 Age (years)
Ageing demographic 2001-2015 - 2080 +85 30-34 45-49 http://ec.europa.eu/eurostat/statistics-explained/index.php/file:population_pyramids,_eu- 28,_2015_and_2080_(%C2%B9)_(%25_of_the_total_population)_YB16.png
Joint Programming - a definition Three pillars: Shared vision: JPND countries engage voluntarily and on a variable-geometry basis to tackle the major societal challenge of neurodegenerative diseases Reactive management structure: to address as efficiently as possible this societal challenge Common strategic research and innovation agenda: developed and implemented by all JPND countries
JPND brings together Researchers (Basic, Clinical, Healthcare/Social) National Funding Bodies National Research Strategies and Investments Industry
What are the goals of JPND? To tackle the challenge of Alzheimer s and other neurodegenerative diseases, the goals of the JPND Research Strategy are: 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
A European Research Area and beyond We cannot tackle neurodegenerative diseases by acting as single countries JPND is the largest global ND research initiative led by EU countries, with 30 participating EU member states Associated countries Third countries Increasing coordination of national research programmes to improve impact and effectiveness Australia Bulgaria Albania Austria Belgium Canada Croatia Czech Republic Denmark Finland France Germany Greece Hungary Ireland Israel Italy Luxembourg Netherlands Norway Poland Portugal Romania Slovakia Slovenia Spain Sweden Switzerland Turkey United Kingdom
Scope of the JPND initiative Disease areas that the JPND Scientific Advisory Board has included: Alzheimer's disease and other dementias Huntington's disease Motor Neurone Diseases Parkinson's disease and PD-related disorders Prion disease Spinal muscular atrophy (SMA) Spinocerebellar ataxia (SCA) Disease areas that the JPND Scientific Advisory Board have excluded: Multiple sclerosis Age-related macular degeneration Conditions where the primary lesion is not neurodegenerative Loss of function or cell death due directly to cancer, oedema, haemorrhage, trauma, poisoning and hypoxia Comorbid conditions
Scope of the initiative Focus on Three Domains Scientific Animal models Biobanks Cohorts/registries Disease pathology Social Health care delivery Home automation Health economics Ethics Medical Early diagnosis Prevention Clinical trials
Organisation Management Board 30 countries represented Members mandated to act Chair Philippe Amouyel - France Executive Board Vice-Chair Adriana Maggi - Italy Robin Buckle UK Marlies Dorlochter - Germany Mogens Horder - Denmark Steering Committee Executive Board + Edvard Beem - Netherlands Rainer Girgenrath - Germany Grace Kiser France Scientific Advisory Board 15 Members, chosen for scientific excellence and competence Chair Thomas Gasser - Germany JPND partly supported by FP7-JUMPAHEAD / H2020 JPco-fuND / JPsustaiND
JPND progress to date Common European Strategy Phase I Implementation (2012-2014) Transnational Calls Alignment Actions Phase II Implementation (2015-2020) National Plans and Strategies Communication + Dissemination
Defragmentation what JPND is all about STRATEGIC RESEARCH AGENDA ALIGNMENT OF EU COUNTRIES ON COMMON RESEARCH GOALS
SRA Implementation (2012-2016) Annual Calls for Proposals Year Total fund Research Area No. of Projects 2011 (pilot) 16M Optimization of biomarkers + harmonization of their use 2012 18M Risk and Protective Factors 5 2012 11M Evaluation of Healthcare 6 2013 12M Cross Disease Analysis 10 2013 11M Preventive Strategies 5 2014 0.5M Working Groups Cohort Studies 10 4 2015 36M 2016 0.6M Longitudinal Cohort Approaches; Advanced Experimental Models; Risk and Protective Factors. Working Groups on Harmonisation and Alignment in Brain Imaging Methods 21 10
SRA Implementation (2012-2016) BE Projects Year Total fund BE No. of BE Projects 2011 16M IWT 250K; Innoviris 300K; FNRS 200K 0 2012 18M 0 0 2012 11M? ALS Care KUL 2013 12M 2013 11M FWO top up funding FWO top up funding PrPC&PDK1 KUL 0 2014 0.5M 0 2015 36M FWO 200 K FNRS 200 K asynprotec KUL INSTALZ KUL SYNACTION KUL 2+1 2016 0.6M 0 0
JPND calls: reaching a critical mass Year # proposals # teams Funded teams Funded projects BE 2011 14 165 88 4/5-2012 52 307 41 5/18-2012 22 122 41 6/9 ALS Care KUL 2013 92(46) 368 50 10/23 PrPC&PDK1 KUL 2013 35(25) 160 26 5/5-2015 175(92) 892 123 21/29 asynprotec KUL INSTALZ KUL SYNACTION KUL 2+1 Rapid-Action calls 2014 22 332 158-2016 18 291 - -
Linking excellence network together Center of Excellence Network (CoEN)
Centres of Excellence in Neurodegeneration (CoEN)
Centres of Excellence in Neurodegeneration (CoEN) BE prjs 2011 Ph I 1 funded - UA 1 unfunded - KUL 2012-2013 Ph II 1 funded - KUL 2015-2016 Ph II No budget provided
JPND Alignment Actions
Additional activities Research mapping Longitudinal cohorts portal Experimental models site Recommendations from Action Groups and community-based Working Groups to develop ideas for future activity
How can countries connect with JPND? Members of JPND benefit from an overview of coordinated activity between 30 countries, accessible through one entry point, as well as opportunities to shape harmonised global approaches for both research and policy. Engagement may include: Interactions with a JPND body (e.g., Scientific Advisory Board or Management Board) to further JPND s understanding of a country s research strategy, strengths and resources and to identify where there may be potential for new links and knowledge sharing Participation in a JPND conference Scientific participation in JPND Working Groups Contribution to one or more future JPND funding calls Full participation and membership
Future Sustainability of JPND A global challenge: Japan, India, US, OECD, G7, patient organisations, Towards an Article 185 initiative? Mapping exercise Cross borders in Belgium Research Public health Welfare and well being Patient organisation
Keep up to date Visit the JPND website: http://www.jpnd.eu Sign up to the JPND News Feeds E-mail us: secretariat@jpnd.eu @JPNDEurope