Enda Connolly delivered a JPND presentation at the Healthy Diet for Healthy Life (HDHL) Management Board meeting in Vienna on February 20th, 2014

1. JPND and HD4HL
Enda Connolly
JPND Management Board Member
20/02/2014

2. 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.

3. We cannot tackle neurodegenerative
diseases by acting as single countries
JPND is a global research initiative
led by EU countries, with 28 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
Romania
Slovakia
Slovenia
Spain
Sweden
Switzerland
Turkey
United Kingdom

4. JPND brings together….
•
Researchers (Basic, Clinical, Healthcare/Social)
•
National Funding Bodies
•
National Research Strategies and Investments

5. 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

6. Organisation
Management Board
•
•
•
27 countries represented
Members mandated to act
Chair Philippe Amouyel
- France
Executive Board
•
•
•
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Vice-Chair Adriana Maggi
Robin Buckle
Mogens Horder
Marlies Dorlochter
- Italy
- UK
- Denmark
- Germany
Steering Committee
Executive Board +
• Enda Connolly
• Rainer Girgenrath
• Edvard Beem
- Ireland
- Germany
- Netherlands
Scientific Advisory Board
•
18 Members, chosen for scientific
excellence and competence
JPND currently partly supported by FP7-JUMPAHEAD (GA. 260774)

7. DEFRAGMENTATION
- WHAT JPND IS ALL ABOUT
STRATEGIC RESEARCH AGENDA
ALIGNMENT OF EU COUNTRIES
ON COMMON RESEARCH GOALS

8. Scope of the initiative
Focus on
Three Domains
Scientific
• Animal models
• Biobanks
• Cohorts/registries
• Disease pathology
Medical
• Early diagnosis
• Prevention
• Clinical trials
Social
• Health care delivery
• Home automation
• Health economics
• Ethics

9. JPND Research Strategy
(SRA)
•
Agreed by 25 Member States + Assoc. Countries
•
•
Officially Launched Feb 7th 2012
Thematic priorities for future research:
•
The origins of neurodegenerative disease
•
Disease mechanisms and models
•
Disease definitions and diagnosis
•
Developing therapies, preventive strategies and interventions
•
Healthcare and social care

10. JPND Research Strategy
(SRA)
•
SRA Enabling Activities:
• JPND will deliver the SRA within the next ten years through
a combination of:
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
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


Knowing our research capability
Opportunities for infrastructure and platforms
Working in partnership with industry
Working with the regulators
Global partnership
Capacity building
Education and training
Connection to policy makers
Communication and outreach

11. 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

12. JPND Actions to date
•
Common European Strategy
•
Phase I SRA Implementation (2012-2014)
• Annual Transnational Calls for Proposals
• Action Groups
•
National Plans and Strategies
•
Communication + Dissemination

13. SRA Implementation (2012-2014)
Annual Calls for Proposals
Year
Total fund
available
Research Area
No. of
Projects
2011
€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
Closed Feb
18th, 2014
2013
€11M
Preventive Strategies
Closed Feb
20th, 2014
(pilot)
Centres of Excellence in Neurodegeneration (CoEN)
2011
€6M
Phase I : common resources and
methodological approaches
8
2012-13
€8M
Phase II : “Pathfinder” projects
5

14. Call statistics
No. of
Budget
No. of
proposals
requested
proposals
recommended
(million €)
supported
for funding
Year
Call area of interest
No. of
proposals
submitted
2011
Harmonization of
Biomarkers
14
€31
5
4
€14
29%
2012
Risk and Protective
Factors
52
€97
18
5
€17
10%
2012
Healthcare Evaluation
22
€29
9
6
€9
27%
88
€157m
32
15
€40m
17%
Total
Budget
supported
(million €)
Success
rate (%)

15. JPND-supported projects
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Biomarker Harmonization
•
•
Risk Factors
•
•
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BIOMARKAPD: Standardizing biomarker measurements across Europe for
Alzheimer’s and Parkinson’s Disease
COURAGE-PD: Risk factor assessment for genetics and environment in
Parkinson‘s Disease
STRENGTH:
Survival, Trigger and Risk, Epigenetic, Environmental and Genetic
targets for Motor Neuron health
Healthcare Evaluation
•
ALS-CaRE: A programme for ALS care in Europe
•
RHAPSODY: Research to access policies and strategies for dementia
in the young

16. JPND-supported projects
Fact Sheets
Publications

17. SRA Implementation (2012-2014)
Action Groups
•
To determine transnational research needs and opportunities
•
(chair: E. Connolly)
•
Animal and Cell Models
(chair: A. Maggi)
•
Assisted Living Technologies
(chair J. Hoogendam)
•
•
Palliative Care
Longitudinal Cohort Studies
(chair: R. Buckle)
To promote engagement, commitment and partnerships
•
Engagement and partnership with the EC
(chair: P. Amouyel)
•
Engagement and Partnership with Industry
(chair: A. Maggi)
•
User and Public Involvement in ND Research
(chair: M. Horder)
•
Linkage + Alignment of National Plans and Initiatives (chair: E. Hirsch)

18. Action Group Recommendations

19. Partnership with the EC
•
Establish a programme of co-investment
•
Work towards a sustained increase of investments from JPND partners
•
Leverage the value of investments and resources at both national and EC
level, to the benefit of Europe
Examples:
• Synergy between JPND actions and H2020 programme
• Linking national plans through actions engaging national infrastructures
• Development and long term sustainability of European cohorts
• Unlocking national capability on fellowship programs

20. Partnership with the EC
•
•
First call of Horizon 2020 (Dec. 2013)
ERA-NET:
• “Establishing synergies between the Joint Programming on
Neurodegenerative Diseases Research and Horizon 2020”.
• Proposal should:
• coordinate national and regional programmes for research in the area of ND
diseases research by implementing a transnational call with EU co-funding
• Potential call topics:
• Identification of genetic, epigenetic and environmental risk + protective factors
• Longitudinal cohorts in ND research
• Advanced experimental models of ND

21. Declaration from
G8 summit on dementia
•
In response, the OECD is launching a project in 2014 for research on
Alzheimer’s and dementia:
•
Aimed at strengthening international collaboration and promote data
sharing at the international level
•
JPND invited to join the project Advisory Group
•
OECD plans a G8 mapping based upon JPND mapping methodology

22. Collaboration with JPI HDHL
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Shared goals and activities
•
Possible collaboration

23. Trends of reduced dementia occurrence
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At least five studies provide evidence suggesting that incidence of dementia
may have decreased over the last 20 years (still, prevalence is increasing):
•
Rocca et al. Trends in the incidence and prevalence of Alzheimer’s disease, dementia, and cognitive impairment in the United States. Alzheimer’s &
Dementia 2011
•
Schrijvers et al. Is dementia incidence declining? Trends in dementia incidence since 1990 in the Rotterdam study. Neurology 2012
•
Qiu et al. Twenty-year changes in dementia occurrence suggest decreasing incidence in central Stockholm, Sweden. Neurology 2013
•
Christensen et al. Physical and cognitive functione of people older than 90 years: a comparison of two Danish cohorts born 10 years apart. The
Lancet 2013
•
Matthews et al. A two-decade comparison of prevalence of dementia in individuals aged 65 years and older from three geographical areas of
England: results of the Cognitive Function and Ageing Study I and II. The Lancet 2013
•
Why? - Better awareness / treatment of lifestyle-related risk factors
•
Successful Prevention!
Jan 28, 2014
Bengt Winblad, Karolinska Instituet, Sweden
23

24. Risk factors in AD; possible prevention
?
Healthy brain
Alzheimer brain
What can we do ourselves to at
least delay Alzheimer’s Disease onset?
Some tested ”drugs” in prevention trials:
Active lifestyle
- Anti-inflammatory (eg NSAIDs)
- Gingko Biloba
- Vitamin B, C, D and E
- Estrogens
- ”Medical food”
- Physical, Social, Mental
Control of co-morbidity
- Diabetes, Hypertension,
Hypercholesterolemia
- Souvenaid, Axona, Nestlé, Smartfish,
Nutrition
- ”Healthy” food intake
Jan 28, 2014
Bengt Winblad, Karolinska Instituet, Sweden
24

25. Epidemiology/Risk factor research;
Intervention – the way forward to 2025
Jan 28, 2014
Bengt Winblad, Karolinska Instituet, Sweden

26. Report of the Action Group on
Longitudinal Cohort Studies
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JPND actions: for ND research on longitudinal cohort studies
● general population-based cohorts
● targeted (preclinical) and disease-focused cohorts
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169 European studies examined
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Annexes provide detail on:

24 exemplar studies
 33 studies on imaging measures
 weblinks / references for all 169 cohorts
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Recommendations span
● co-ordination
● funding
● policy

27. Recommendations for delivery
(Coordination)
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Coordination and development of best practice
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A series of JPND workshops to address challenges such as:
• Preclinical stages of ND (methodologies, tools, measures e.g.
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•
•
•
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imaging)
Cognition, behaviour & function: definitions of functional change,
trajectory, outcomes
Data handling: integration of -omics data, sharing big datasets
Cohort alignment: where can data be pooled to provide benefit
Clinical data linkage: how to exploit, harmonise, score, access
Exploiting intervention studies of potential risk factors (vascular, T2D)
to address ND risk as an outcome

28. Potential Next Steps
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Arrange a small scientific working group
• SAB-based?
•
Determine potential areas of collaboration
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Identify possible actions
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Report back to JPND and HD4HL

29. Keep up to date
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Visit the JPND website:
• http://www.neurodegenerationresearch.eu
• http://www.jpnd.eu
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Sign up to the JPND News Feeds
•
Follow JPND Progress pages
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E-mail us: secretariat@jpnd.eu
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Follow us on Twitter:
@JPNDEurope