JPND e Piano Nazionale per le Demenze in Francia Professor Philippe Amouyel Nov. 22nd, 2013, Milan
Jun 30, 2015
JPND e Piano Nazionale per le Demenze in Francia
Professor Philippe AmouyelNov. 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
3
Let healthy ageing have a future
Plan Alzheimer 2008-2012
Family caregiver
Respectguarantee the dignity
of the person with Alzheimer ’s and ethics of this key
social issue
Health
Person with Alzheimer’s
3 axis
3 objectives
3 targets
Cureknow the disease and
find a medical treatment
Take carelook after and increase
quality of life for patients and carers
Disease
Solutions explorer and organizer
Research Solidarity
A major investment 3 axes 11key measures 44 specific aims 1.6 billion euros over 5 years
Social support €1.2 billion Medical support €200 million Research segment €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
General Practitioners
Specialists469 Memory Clinics
( 500 sites)
• 28 Referal and Research Memory Clinics
• 1 Center for EO Alzheimer patients: 27correspondants
• 70 liberal neurologists
MAIA
Home
Out of Home specialized structures
Home rehabilitation: 423 spécialized teams
Respite and support134 platforms
12,500 new day care places
Hospital : 78 rehabilitation units
+ 37scheduled
Nursing Homes1092 « Pôles d’activités » (PASA)154 « Unités d’Hebergement Renforcées »(UHR)
Persons with
dementia and
caregivers
TAKING CAREDIAGNOSING
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)
• 148 MAIA (+50)
• 157pilots and case managers
New structures adapted to disease severity
0100200300400500600700800
2008 2009 2010 2011 2012
UCC
MAIA
UHR
ESA
PASA
AJ/PLT
0
2000
4000
6000
8000
10000
12000
14000
16000
2008 2009 2010 2011 2012
plateformes
AJ
0
5000
10000
15000
20000
25000
2008 2009 2010 2011 2012
Nouveauxprofessionnels
aidants
Number of new day care centersand multiservice respite platforms
Number of newly trained informal caregivers and health professionals ( case managers, care assistants for the elderly, ergotherapeuts, pschomotricians)
In hospital rehabilitation units
Networks for integrated care of AZ people
Day and night units for patients with BPSD
Reinforced home support teams
Day units for occupational therapies
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 = Foundationfor 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 billionMedical €0.2 billionResearch€0.2 billion
A new governance: project management
Collaborateat the international
level
www.jpnd.euTwitter: @JPNDEurope
27 countriesCommon Research
Strategy
15 research initiatives
Research200 millions €
5 years (2008-2012)3 axes11 key measures47 initiatives
StimulateTo increase
researcher critical mass
StructureTo offer dedicated
tools
CoordinateTo optimize the
research resources
CohortsClinicalbiology
Clinical researchTherapeuticalresearch
Epidemiologicalresearch
SHS research
SHS
A Global Challenge Requires Global Collaboration
Map of Scientific Collaborations between world cities (2005-2009), Oliver H. Beauchesne, 2011
European Commission - DG Research - Coordination of national programmesG. Clarotti - JP - 03-10 13
Public Funding for Research (Source : ERA Key Figures 2007, EC)
0
10000
20000
30000
40000
50000
60000
70000
80000
90000
100000
Ger
man
y
Fran
ce UK
Italy
Spa
in
EU
Com
mun
ity
Net
herla
nds
Sw
eden
Bel
gium
Finl
and
Aus
tria
Den
mar
k
Por
tuga
l
Irela
nd
Pol
and
Gre
ece
Cze
ch re
p.
Hun
gary
RO
man
ia
Slo
veni
a
Slo
vaki
a
Bul
garia
Luxe
mbo
urg
Lith
uani
a
Est
onia
Cyp
rus
Latv
ia
Mal
ta
Chi
na
Japa
n
Uni
ted
Sta
tes
Mio
Eu
ro
A compartmentalised ERA
European Commission - DG Research - Coordination of national programmesG. Clarotti - JP - 03-10 14
Public Funding for Research (Source : ERA Key Figures 2007, EC)
0
10000
20000
30000
40000
50000
60000
70000
80000
90000
100000
Ger
man
y
Fran
ce UK
Italy
Spa
in
EU
Com
mun
ity
Net
herla
nds
Sw
eden
Bel
gium
Finl
and
Aus
tria
Den
mar
k
Por
tuga
l
Irela
nd
Pol
and
Gre
ece
Cze
ch re
p.
Hun
gary
RO
man
ia
Slo
veni
a
Slo
vaki
a
Bul
garia
Luxe
mbo
urg
Lith
uani
a
Est
onia
Cyp
rus
Latv
ia
Mal
ta
Chi
na
Japa
n
Uni
ted
Sta
tes
Mio
Eu
ro
A compartmentalised ERA
EU27 + EC
European Commission - DG Research - Coordination of national programmesG. Clarotti - JP - 03-10 15
Public Funding for Research (Source : ERA Key Figures 2007, EC)
0
10000
20000
30000
40000
50000
60000
70000
80000
90000
100000
Ger
man
y
Fran
ce UK
Italy
Spa
in
EU
Com
mun
ity
Net
herla
nds
Sw
eden
Bel
gium
Finl
and
Aus
tria
Den
mar
k
Por
tuga
l
Irela
nd
Pol
and
Gre
ece
Cze
ch re
p.
Hun
gary
RO
man
ia
Slo
veni
a
Slo
vaki
a
Bul
garia
Luxe
mbo
urg
Lith
uani
a
Est
onia
Cyp
rus
Latv
ia
Mal
ta
Chi
na
Japa
n
Uni
ted
Sta
tes
Mio
Eu
ro
A compartmentalised ERA
EU27 + ECTransnational Collaboration
in EU 27: 10 to 15 %
Competitive Federal Funding
in US : 85 to 90 %
Ocean energy
Hydrogen and fuel cells
CO2 capture and storage
Wind energy
Biomass - Bioenergy
GeothermalGrids electricity
Cancer
Brain diseases
Dementia - Alzheimer
Nanotechnologies
Biotechnologies
Industrial biotechnology
Information and communication technology
Space
Pollution and environmental protection
Polar programs
Agriculture Production and Technology
Nuclear fusion
Photovoltaic
Concentrated solar thermal
Civil security
nanotechnology’s potential risks
Rare diseases
Low coordination/ High fragmentation Low fragmentation / High coordination
Inve
stin
g le
ss
than
the
US
In
vest
ing
mor
e th
an th
e U
SIn
vest
ing
as
muc
h a
s th
e U
S
Medium
Research efforts are fragmented
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
AlbaniaAustriaBelgiumCanadaCroatiaCzech
RepublicDenmarkFinlandFrance
GermanyGreece
HungaryIrelandIsraelItaly
LuxembourgNetherlands
NorwayPoland
PortugalSlovakiaSlovenia
SpainSweden
SwitzerlandTurkeyUnited
Kingdom
JPND is a global research initiative led by EU countries, with 27 participatingEU Member statesAssociated countries Third countries
Increasing coordination of national research programmes to improve impact and effectiveness
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: 1.621 Billion*
• Basic research: 1.362 Billion• Clinical research: 183 Million• Healthcare/Social Research: 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 diseaseMotor 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 COUNTRIESON COMMON RESEARCH GOALS
JPND currently partly-supported by FP7-JUMPAHEAD (GA. 260774)
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
Scientific Advisory Board• 18 Members, chosen for scientific
excellence and competence
Organisation
Steering Committee• Executive Board
+ Enda Connolly - Ireland+ Edvard Beem - Netherlands
Societal Needs
Creative research
(Idea Generation)
Innovation(Idea Implementation)
• 27 JPND Members
• Member States
• Assoc. Countries
• Third Countries
• Eur. Commission
• Industry
• Public and Users
• Common Strategy
• Transnational Calls
• Alignment Actions
• National Plans
• Communication and
Dissemination
• New treatments +
preventive strategies
• Improved health + social
care approaches
• De-stigmatize ND
• Alleviate economic and
social burden
PARTNERSHIP ACTIONS OUTCOMES
JPND Research
Basic Clinical Healthcare/Social
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
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
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
Early December 2013
Online Partnering Tool
Online Partnering Tool
Create Personal ProfileRegister Research Group
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 • No national roadmap • No identified priority actions in the field of ND research
• Those who do, take different approaches • 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: [email protected]
• Follow us on Twitter:
@JPNDEurope