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Joint Programming in
Neurodegenerative Disease Research (JPND)
Meeting the needs of patients, academia, and industry
Martin Rossor
Vice-Chair, JPND Scientific Advisory Board
20/06/2013
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 EU countries,
with 27 member states, associated countries
and third countries participating
JPND brings together……
• Scientists
• Independent Scientific Advisory Board - 18 of the world’s top basic, clinical and
healthcare research scientists in the ND area
• Research Evidence
• JPND Mapping Database demonstrates the current scale and scope of ND research
amongst JPND-participating countries
• The greatest amount of funds available for ND research is through national
government budgets:
• Total research funding: 1.621 Billion
• Basic research: 1.362 Billion
• Clinical research: 183 Million
• Healthcare/Social Research: 76 Million
• National Research Funding bodies
• 27 countries participating in the JPND Management Board
• each member mandated by their government to act and to commit funds
JPND Mapping
 €1.62bn investment – 357 programmes, 1887 smaller projects
 238 bioresources captured
Survey Section Entries Which represents:
Organisational Details 75 Organisations from 21 countries
Smaller Investments 1887
€0.29 billion – 69 agencies from 21 countries
+ EC including ERC, covering 1756 projects
Major Programmes 357
€1.33 billion - 41 funding agencies
(13 countries + EC - including ERC)
Research Networks 34 8 countries + Europe-wide
Population Cohorts 72 15 countries + Europe-wide
Case Control Studies 22 9 countries
Disease Registries 21 9 countries + Europe-wide
DNA, Tissue & Cell line Banks 87 15 countries
Animal Model Repositories 12 8 countries
Bio/Neuro Infrastructures 24 8 countries + Europe-wide
DEFRAGMENTATION –
WHAT JPND IS ALL ABOUT
STRATEGIC RESEARCH AGENDA
ALIGNMENT OF EU COUNTRIES
ON COMMON RESEARCH GOALS
Meeting needs of stakeholders
• SRA Delivery took into account:
• SAB recommendations
• Outputs from 4 scientific/strategic workshops
• National and European portfolios
• Mapping exercise of National/European programmes
• Broad consultation with stakeholder groups
• Both Online and Offline
• Modification of Scientific Advisory Board
• Now includes scientists representing patient groups (2) and industry (2)
• Ongoing communication + engagement of stakeholders
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
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
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
an environment ripe for innovation?
• Joint Transnational Calls
• One in 2011 for €16 M
• Optimization of biomarkers and harmonization of their use
• Two in 2012-2013 for €29 M
• Risk Factors + Evaluation of Heathcare
• Two in 2013-2014
• Centres of Excellence in Neurodegeneration (CoEN)
• 2011 for € 6M
• 2012-13 for € 8M – Pathfinder projects
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
Partnering with Industry
• Substantive participation in development of JPND Research
Strategy
• Now Members of Scientific Advisory Board
• Ongoing discussions with EFPIA-IMI
• Expand the engagement to medical device, IT, diagnostics,
imaging, welfare technologies, AAL, …)
• JPND Industry Action Group established to develop new
public-private-partnerships
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
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?
Courtesy M. Di Luca 2013
Morris et al, 2012
FTLD Progranulin Mutation
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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Martin Rossor, Oxford UK, June 20th 2013

  • 1. Joint Programming in Neurodegenerative Disease Research (JPND) Meeting the needs of patients, academia, and industry Martin Rossor Vice-Chair, JPND Scientific Advisory Board 20/06/2013
  • 2. 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 EU countries, with 27 member states, associated countries and third countries participating
  • 3. JPND brings together…… • Scientists • Independent Scientific Advisory Board - 18 of the world’s top basic, clinical and healthcare research scientists in the ND area • Research Evidence • JPND Mapping Database demonstrates the current scale and scope of ND research amongst JPND-participating countries • The greatest amount of funds available for ND research is through national government budgets: • Total research funding: 1.621 Billion • Basic research: 1.362 Billion • Clinical research: 183 Million • Healthcare/Social Research: 76 Million • National Research Funding bodies • 27 countries participating in the JPND Management Board • each member mandated by their government to act and to commit funds
  • 4. JPND Mapping  €1.62bn investment – 357 programmes, 1887 smaller projects  238 bioresources captured Survey Section Entries Which represents: Organisational Details 75 Organisations from 21 countries Smaller Investments 1887 €0.29 billion – 69 agencies from 21 countries + EC including ERC, covering 1756 projects Major Programmes 357 €1.33 billion - 41 funding agencies (13 countries + EC - including ERC) Research Networks 34 8 countries + Europe-wide Population Cohorts 72 15 countries + Europe-wide Case Control Studies 22 9 countries Disease Registries 21 9 countries + Europe-wide DNA, Tissue & Cell line Banks 87 15 countries Animal Model Repositories 12 8 countries Bio/Neuro Infrastructures 24 8 countries + Europe-wide
  • 5. DEFRAGMENTATION – WHAT JPND IS ALL ABOUT STRATEGIC RESEARCH AGENDA ALIGNMENT OF EU COUNTRIES ON COMMON RESEARCH GOALS
  • 6. Meeting needs of stakeholders • SRA Delivery took into account: • SAB recommendations • Outputs from 4 scientific/strategic workshops • National and European portfolios • Mapping exercise of National/European programmes • Broad consultation with stakeholder groups • Both Online and Offline • Modification of Scientific Advisory Board • Now includes scientists representing patient groups (2) and industry (2) • Ongoing communication + engagement of stakeholders
  • 7. 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
  • 8. 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
  • 9. 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
  • 10. What are the conditions that create an environment ripe for innovation? • Joint Transnational Calls • One in 2011 for €16 M • Optimization of biomarkers and harmonization of their use • Two in 2012-2013 for €29 M • Risk Factors + Evaluation of Heathcare • Two in 2013-2014 • Centres of Excellence in Neurodegeneration (CoEN) • 2011 for € 6M • 2012-13 for € 8M – Pathfinder projects
  • 11. 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
  • 12. Partnering with Industry • Substantive participation in development of JPND Research Strategy • Now Members of Scientific Advisory Board • Ongoing discussions with EFPIA-IMI • Expand the engagement to medical device, IT, diagnostics, imaging, welfare technologies, AAL, …) • JPND Industry Action Group established to develop new public-private-partnerships
  • 13. 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
  • 14. 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? Courtesy M. Di Luca 2013
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  • 19. 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