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(1)

Joint Programming in

Neurodegenerative Disease Research (JPND)

Coordinating approaches to research across the globe

Kathleen.dhondt@ewi.vlaanderen.be

(2)

What is Joint Programming?

Member States-led in Europe

to address “Grand Challenges”

Coordination of national research programmes

increase the impact and effectiveness of research efforts

Source : Communication from the Commission to the European Parliament, the Council, the European Economic and social committee and the Committee of the Regions toward Joint Programming in Research : Working together to tackle common challenges more effectively - COM(2008) 468 final, Brussels

(3)

Major societal “Grand Challenges”

Energy

Neurodegeneration Climate Change

Food & Health

(4)

Overcoming barriers

Fragmented Research

Non-concerted National Funding

Duplication

Shared research exists via EC (< 5% of total EU budget)

(5)

16% of the European population is over 65 by 2030

25%

NDs affect over 7 million people in Europe: x2 every 20 years

Costs: €130 billion per annum

Chronic: 2-10 years

affecting at least 1-2 others health care cost burden

Neurodegenerative diseases challenge

0 10 20 30 40

60 70 80 90 100

Age (years)

Cases / 100

Stroke Dementia

Parkinson's

(6)

Ageing demographic 2001 - 2015 - 2080

http://ec.europa.eu/eurostat/statistics-explained/index.php/File:Population_pyramids,_EU- 28,_2015_and_2080_(%C2%B9)_(%25_of_the_total_population)_YB16.png

30-34

45-49 +85

(7)

Joint Programming - a definition

Three pillars:

Shared vision: JPND countries engage voluntarily and on a variable-geometry basis to tackle the major societal challenge of neurodegenerative diseases

Reactive management structure: to address as efficiently as possible this societal challenge

Common strategic research and innovation agenda:

developed and implemented by all JPND countries

(8)

JPND brings together

Researchers (Basic, Clinical, Healthcare/Social)

National Funding Bodies

National Research Strategies and Investments

Industry

(9)

What are the goals of JPND?

To tackle the challenge of Alzheimer’s and other

neurodegenerative diseases, the goals of the JPND Research Strategy are:

• 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

(10)

We cannot tackle neurodegenerative diseases by acting as single countries

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

JPND is the largest global ND research initiative led by EU countries, with 30 participating

EU member states Associated countries Third countries

Increasing coordination of national

research programmes to improve impact and effectiveness

A European Research Area and beyond

Australia

Bulgaria

(11)

Scope of the JPND initiative

Disease areas that the JPND Scientific Advisory Board has included:

Alzheimer's disease and other dementias

Huntington's disease

Motor Neurone Diseases

Parkinson's disease and PD-related disorders

Prion disease

Spinal muscular atrophy (SMA)

Spinocerebellar ataxia (SCA)

Disease areas that the JPND Scientific Advisory Board have excluded:

Multiple sclerosis

Age-related macular degeneration

Conditions where the primary lesion is not neurodegenerative

Loss of function or cell death due directly to cancer, oedema, haemorrhage, trauma, poisoning and hypoxia

Comorbid conditions

(12)

Scientific

Animal models

• Biobanks

• Cohorts/registries

• Disease pathology

Social

Health care delivery

• Home automation

• Health economics

• Ethics

Medical

Early diagnosis

• Prevention

• Clinical trials

Focus on

Three Domains

Scope of the initiative

(13)

JPND partly supported by FP7-JUMPAHEAD / H2020 JPco-fuND / JPsustaiND

Management Board

30 countries represented

Members mandated to act

Chair Philippe Amouyel - France

Executive Board

Vice-Chair Adriana Maggi - Italy

Robin Buckle – UK

Marlies Dorlochter - Germany

Mogens Horder - Denmark

Scientific Advisory Board

• 15 Members, chosen for scientific excellence and competence

• Chair Thomas Gasser - Germany

Organisation

Steering Committee

Executive Board +

• Edvard Beem - Netherlands

• Rainer Girgenrath - Germany

• Grace Kiser – France

(14)

JPND progress to date

Common European Strategy

Phase I Implementation (2012-2014)

Transnational Calls

Alignment Actions

Phase II Implementation (2015-2020)

National Plans and Strategies

Communication + Dissemination

(15)

Defragmentation

– what JPND is all about…

STRATEGIC RESEARCH AGENDA

ALIGNMENT OF EU COUNTRIES ON COMMON RESEARCH GOALS

(16)

SRA Implementation (2012-2016) Annual Calls for Proposals

Year Total fund Research Area No. of Projects

2011

(pilot) €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 10

2013 €11M Preventive Strategies 5

2014 €0.5M Working Groups Cohort Studies 10

2015 €36M

Longitudinal Cohort Approaches;

Advanced Experimental Models;

Risk and Protective Factors.

21

2016 €0.6M Working Groups on Harmonisation and 

Alignment in Brain Imaging Methods 10

(17)

SRA Implementation (2012-2016) BE Projects

Year Total fund BE No. of BE Projects

2011 €16M IWT 250K; Innoviris 300K; FNRS 200K 0

2012 €18M 0 0

2012 €11M ? ALS‐Care KUL

2013 €12M FWO top up funding 

PrPC&PDK1 KUL

2013 €11M FWO top up funding 

0

2014 €0.5M 0

2015 €36M FWO 200  K

FNRS 200 K

aSynProtec KUL INSTALZ KUL SYNACTION KUL

2+1

2016 €0.6M 0 0

(18)

JPND calls: reaching a critical mass

Year #

proposals # teams Funded teams Funded projects BE

2011 14 165 88 4/5 -

2012 52 307 41 5/18 -

2012 22 122 41 6/9 ALS‐Care KUL

2013 92(46) 368 50 10/23 PrPC&PDK1 KUL

2013 35(25) 160 26 5/5 -

2015 175(92) 892 123 21/29

aSynProtec KUL INSTALZ KUL SYNACTION KUL

2+1

“Rapid-Action” calls

2014 22 332 158 -

2016 18 291 - -

(19)

Linking excellence network together

Center of Excellence Network (CoEN)

(20)

Centres of Excellence in

Neurodegeneration (CoEN)

(21)

Centres of Excellence in Neurodegeneration (CoEN)

BE prjs

2011 Ph I 1 funded - UA

1 unfunded - KUL 2012 - 2013 Ph II 1 funded - KUL

2015-2016 Ph II No budget provided

(22)

JPND Alignment Actions

(23)

Additional activities

Research mapping

Longitudinal cohorts portal

Experimental models site

Recommendations from Action Groups and community-based Working Groups to develop ideas for future activity

(24)

How can countries connect with JPND?

Members of JPND benefit from an overview of coordinated activity between 30 countries, accessible through one entry point, as well as opportunities to shape harmonised global approaches for both research and policy.

Engagement may include:

Interactions with a JPND body (e.g., Scientific Advisory Board or Management Board) to further JPND’s understanding of a country’s research strategy, strengths and resources and to identify where there may be potential for new links and knowledge sharing

Participation in a JPND conference

Scientific participation in JPND Working Groups

Contribution to one or more future JPND funding calls

Full participation and membership

(25)

A global challenge: Japan, India, US, … OECD, G7, patient organisations, …

Towards an Article 185 initiative?

Mapping exercise

Cross borders in Belgium

Research

Public health

Welfare and well being

Patient organisation

Future – Sustainability of JPND

(26)

Keep up to date

Visit the JPND website:

http://www.jpnd.eu

Sign up to the JPND News Feeds

E-mail us: secretariat@jpnd.eu

@JPNDEurope

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