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

JPND-supported projects

• www.jpnd.eu

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: secretariat@jpnd.eu

• Follow us on Twitter:

@JPNDEurope