Joint Programming in

Neurodegenerative Disease Research (JPND)

Coordinating approaches to research across Europe

Adriana Maggi

Vice-Chair, JPND Executive Board

28/05/2013

COST OF DISORDERS OF THE BRAIN IN EUROPE

Estimates in 2004

Estimates in 2010

(1) Referred to as “effective disorders” in 2005, (2) includes only incident cases in 2010, (3) weighted mean from all countries and diagnoses (5) including also persons with zero costs, (6) excluding indirect costs, (7) excluding PTSD

(European Neuropsychopharmacology (2011) 21, 718-779)

A global health and

economic emergency

• Between now and 2050, over 680 million new cases of dementia

will be diagnosed worldwide 1

• That’s 680 million people living with dementia in the next 40 years!

• more than the population of all of North America (542 million) and nearly as

much as all of Europe (738 million)

• ND are the most expensive of all known diseases • Global cost of dementia in 2010 is $604 billion - 1% of global GDP 2

• Current economic crisis is affecting research budgets

A global health and

economic emergency

• Between now and 2050, over 680 million new cases of dementia

will be diagnosed worldwide 1

• That’s 680 million people living with dementia in the next 40 years!

• more than the population of all of North America (542 million) and nearly as

much as all of Europe (738 million)

• ND are the most expensive of all known diseases • Global cost of dementia in 2010 is $604 billion - 1% of global GDP 2

• Current economic crisis is affecting research budgets

1 – World Alzheimer Report 2012

2 – WHO Dementia Report 2012

Impact of a 5-year delay on

the onset by stage of

disease, Americans aged 65

and older with AD, 2050

Changing the trajectory

Proportion of American Age 65 and older with

Azheimer Disease by Stage of Disease 2010-2050

What if we delay the onset

and progression?

Cortesy M. Di Luca 2013

Changing the trajectory

Cortesy M. Di Luca 2013

Impact of a 5-year delay on the onset by stage of disease, Americans aged 65

and older with AD, 2050

AN EPIDEMICS FOR

NEURODEGENERATION?

INCREASING AGE

LACK OF THERAPIES!

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 Slovakia Slovenia

Spain Sweden

Switzerland Turkey

United Kingdom

JPND is a global research initiative

led by countries , with 27 member states,

associated countries and third countries

participating

What is Joint Programming?

A new Member States-led initiative in Europe

which aims to address “grand challenges” to

EU society by coordinating national research

programmes within the EU to increase the

impact and effectiveness of research efforts

JPND is currently supported by FP7-JUMPAHEAD (GA. 260774)

Management Board 27 countries represented Mandated to act Chair Philippe Amouyel (France)

Executive Board Vice-Chair Adriana Maggi (Italy) Enda Connolly (Ireland) Edvard Beem (The Netherlands) Mogens Horder (Denmark)

Scientific Advisory Board 18 Members Chosen for scientific excellence and competence

Organisation

Steering Committee Executive Board+ Rob Buckle (UK) Rainer Girgenrath (Germany) Nihan Eryilmaz (Turkey)

DEFRAGMENTATION, THIS IS

ALL WHAT JPND IS ABOUT

STRATEGIC RESEARCH AGENDA

ALIGNMENT OF EU COUNTRIES

ON COMMON RESEARCH GOALS

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DEFRAGMENTATION, THE JPND APPROACH

The SRA goals

To tackle the challenge of Alzheimer’s and other neurodegenerative diseases*, the goals of the JPND Research Strategy are:

* 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)

• 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

Implementation of the SRA

Create list of priorities from JPND Research Strategy proposals

Organise thematic working groups

Create list of opportunities suited for implementation

Stimulate and align national plans

Set action groups for specific priorities and encouraging alignment

Support implementation

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 +

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

What are the conditions that create

a ripe environment for innovation?

Joint Transnational Calls

One in 2011 for €16 M

Two in 2012-2013 for €29 M

Centres of Excellence in

Neurodegeneration (CoEN) program

2011 for € 6M ; in 2012-13 for € 8M

night science wanders blind. It hesitates, stumbles, recoils, sweats, wakes with a

start. […] There is no way to predict whether night science will ever become day

science; whether the prisoner will emerge from the darkness

«Of flies, mice and man» Francois Jacob

Conscious of its progress, proud of its past, sure of its future, day science advances

in light and glory

Aligning national activities

• JPND Action Group to align existing national resources and initiatives

• to address specific ND research questions

• Focus on linkage, harmonization and data sharing between areas

with high potential for international cooperation

• e.g. connecting national technology platforms or infrastructures

• imaging centres

• biobanking infrastructures

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

Alignment - Actions

• Action Groups have begun in priority areas:

• Longitudinal Cohort Studies

• addressing both disease-based and population-based cohorts

• Animal and Cell Models

• Assisted Living Technologies

• Palliative Care

• User and Public Involvement in Research

The next Challenges

• To continue implementation beyond phase I

• To partner with European Commission

• To partner with Industry

• To ensure JPND sustainability

Partnering with Industry

• Substantive participation in development of JPND Research

Strategy

• Now Members of Scientific Advisory Board

• Ongoing discussions with EFPIA-IMI

• Enlarge the contacts (pharma, device, IT, diagnosis, imaging,

welfare technologies, AAL, …)

• JPND Industry Action Group to develop new public-private-

partnerships

Keep up to date

• Visit the JPND website:

• http://www.neurodegenerationresearch.eu

• http://www.jpnd.eu

• Search our Mapping Database

• Sign up to the JPND News Feeds

• E-mail us: secretariat@jpnd.eu

• Follow us on Twitter: @JPNDEurope