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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
VALIDATEDMODELS
PATHWAYS
DIET
CHOLESTEROL
DISEASEDIAGNOSIS
DIET
NEURONS
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

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Adriana Maggi Month of the Brain conference II

  • 1. Joint Programming in Neurodegenerative Disease Research (JPND) Coordinating approaches to research across Europe Adriana Maggi Vice-Chair, JPND Executive Board 28/05/2013
  • 2. 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)
  • 3. 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
  • 4. 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
  • 5. 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
  • 7. 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
  • 8. 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
  • 9. 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)
  • 10. DEFRAGMENTATION, THIS IS ALL WHAT JPND IS ABOUT STRATEGIC RESEARCH AGENDA ALIGNMENT OF EU COUNTRIES ON COMMON RESEARCH GOALS
  • 12. 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
  • 13. 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
  • 14. 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
  • 15. 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
  • 16. 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
  • 17. 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
  • 18. 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
  • 19. 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
  • 20. The next Challenges • To continue implementation beyond phase I • To partner with European Commission • To partner with Industry • To ensure JPND sustainability
  • 21. 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
  • 22. 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