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JPND e Piano Nazionale per le
Demenze in Francia
Professor Philippe Amouyel
Nov. 22nd, 2013, Milan
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
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
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
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
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)
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
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
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
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
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
A Global Challenge Requires Global Collaboration

Map of Scientific Collaborations between world cities (2005-2009), Oliver H. Beauchesne, 2011
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
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
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
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
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.
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
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
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)
DEFRAGMENTATION
- WHAT JPND IS ALL ABOUT

STRATEGIC RESEARCH AGENDA

ALIGNMENT OF EU COUNTRIES
ON COMMON RESEARCH GOALS
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)
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
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
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
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
JPND-supported projects
•

www.jpnd.eu
Early December 2013
Online Partnering Tool
Online Partnering Tool
Register Research Group

Create Personal Profile
Online Partnering Tool
Register proposal Idea and form consortia online
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
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
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
Next Challenges

•

To continue implementation beyond phase I

•

To partner with the European Commission

•

To partner with Industry

•

To ensure JPND sustainability
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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Philippe Amouyel, JPND Milan Nov. 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        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        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         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
  • 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

Editor's Notes

  1. X-axis: This estimates the degree of coordination among Member State (MS) research programmes and of funding and institutional fragmentation, based on qualitative assessments from scientific publications, strategic reports, etc; Y-axis: This presents the logarithmic ratio of public R&D investment in Europe (MS+European Commission (EC)) compared to US,Size of bubbles: This is directly proportional to the amount of European public funding (MS+EC), based on New Cronos (e.g. GBAORD) and US government data as well as scientific publications. Ideally, some research fields should have been further disaggregated. The biotechnology bubble, for example, should have been divided into health, industrial & environment and plant, animal and food. This was not always possible due to a lack of comparable data.
  2. The challenge of addressing neurodegenerative diseases such as Alzheimer’s and Parkinson’s is a truly global one. Most neurodegenerative diseases (ND) are incurable and are strongly linked with age. Dementias alone affect more than 7 million people in Europe and their care is estimated to cost €130 billion a year. This heavy burden on the individuals with disease, their relatives, and society as a whole is a problem that will only get worse as the European population inexorably ages, and the number of people working in care continues to decrease. Close to 85% of public research funds in the EU are spent independently by Member States
  3. This will be achieved by coordinating current and future approachescollaborating where appropriate sharing tools, techniques and other resources more efficiently among participating countries
  4. JPND Mapping Database demonstrates the current scale and scope of ND research amongst JPND-participating countries
  5. Over €100 million will be made available
  6. Longitudinal Cohort Studies Investigating where current member state-led or EC-supported longitudinal cohort studies can be expanded or better exploited, or new activities identifiedAnimal and Cell Models Identifying the shortcomings of currently available experimental models (both animal and cell-based) and the need for novel models and lines of interventionAssisted Living TechnologiesCollaborating with the Ambient Assisted Living Joint Programme (AAL JP) to meet ND user needs in assisted living technologiesPalliative CareA JPND Action Group is identifying ongoing regional, national and international initiatives with a relevant research focus on palliative/end-of life care, with the objective of bringing relevant groups together to identify where JPND can make an impact.User and Public InvolvementJPND is drafting guidelines for appropriate involvement of patients and public in JPND initiatives, and in relevant national plansMention?:Aligning the optimisation of biomarkers and harmonizing their usein clinical studies 2011 Joint Transnational Call (€16 million – 4 projects funded)
  7. The full potential of JPND will only be reached if participating countries without research strategies in ND can be encouraged to identify their strengths and weaknesses, and agree that supporting neurodegenerative disease research is a national priority Recent national plans include references to JPNDDutch Deltaplan for Dementia, UK Prime Minister’s Challenge on Dementia