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
Neurodegeneration Climate Change
Food & Health
Overcoming barriers
• Fragmented Research
• Non-concerted National Funding
• Duplication
• Shared research exists via EC (< 5% of total EU budget)
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
Neurodegenerative diseases challenge
0 10 20 30 40
60 70 80 90 100
Age (years)
Cases / 100
Stroke Dementia
Parkinson's
Ageing demographic 2001 - 2015 - 2080
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
30-34
45-49 +85
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
We cannot tackle neurodegenerative diseases by acting as single countries
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
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
A European Research Area and beyond
Australia
Bulgaria
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
Scientific
• Animal models
• Biobanks
• Cohorts/registries
• Disease pathology
Social
• Health care delivery
• Home automation
• Health economics
• Ethics
Medical
• Early diagnosis
• Prevention
• Clinical trials
Focus on
Three Domains
Scope of the initiative
JPND partly supported by FP7-JUMPAHEAD / H2020 JPco-fuND / JPsustaiND
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
Scientific Advisory Board
• 15 Members, chosen for scientific excellence and competence
• Chair Thomas Gasser - Germany
Organisation
Steering Committee
Executive Board +
• Edvard Beem - Netherlands
• Rainer Girgenrath - Germany
• Grace Kiser – France
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 4
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
2015 €36M
Longitudinal Cohort Approaches;
Advanced Experimental Models;
Risk and Protective Factors.
21
2016 €0.6M Working Groups on Harmonisation and
Alignment in Brain Imaging Methods 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 FWO top up funding
PrPC&PDK1 KUL
2013 €11M FWO top up funding
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
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
…
Future – Sustainability of JPND
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