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

1. JPND e Piano Nazionale per le
Demenze in Francia
Professor Philippe Amouyel
Nov. 22nd, 2013, Milan

2. French National Plan for Alzheimer’s
Disease and Related Disorders

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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. 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. 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. 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. 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. 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. 15 Specific research measures
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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. 15 Specific research measures







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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. 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. 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. A Global Challenge Requires Global Collaboration
Map of Scientific Collaborations between world cities (2005-2009), Oliver H. Beauchesne, 2011

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

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. 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. 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. 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. 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. JPND-supported projects
•
www.jpnd.eu

28. Early December 2013

29. Online Partnering Tool

30. Online Partnering Tool
Register Research Group
Create Personal Profile

31. Online Partnering Tool
Register proposal Idea and form consortia online

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. 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. 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. Next Challenges
•
To continue implementation beyond phase I
•
To partner with the European Commission
•
To partner with Industry
•
To ensure JPND sustainability

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