joint programming in neurodegenerative disease research ... · 22-23 november 2016 impacts...
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Joint Programming in Neurodegenerative Disease Research (JPND)
Impacts of Public-Public Partnerships
expectations and experiences
Annual Joint Programming Conference
22-23 November 2016
Neurodegenerative Disease Research (JPND)ImpactsCoordinating approaches to research across the globe
Philippe AmouyelJPND Chair
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What is Joint Programming?
Joint programming was originally created as a Member
States-led initiative in Europe. It aims to address “grand
challenges” to EU and global society by coordinatingchallenges” to EU and global society by coordinating
national research programmes to 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
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Ten Grand Challenges
Neurodegeneration
Microbial resistance
Healthy diet
Seas and Oceans
Agriculture
Climate
Culture
Water
Longevity
Urban development
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New forms of long-term collaboration between local, regional, national
and European policy makers and actors that reduce fragmentation and
increase the impact of national RD&I investments
Fostering and testing innovative approaches and science-policy
Overcoming barriers
Fostering and testing innovative approaches and science-policycooperation
Gateways for scientific excellence, relevance and internationalcooperation
Strategic platforms for alignment in the broader sense, using different
instruments and other innovative approaches to achieve their strategic
goals, in conjunction with the Commission's tools.
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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 diseaseschallenge 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 that will be the basis for alignement of national research programs
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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 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
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Scientific• Animal models
• Biobanks Medical• Early diagnosis
Focus on Three Domains
Scope of the JPND initiative
Disease areas • Cohorts/registries
• Disease pathology
Social• Health care delivery
• Home automation
• Health economics
• Ethics
• Early diagnosis
• Prevention
• Clinical trials
Disease areas
Alzheimer's disease and other dementiasHuntington's diseaseMotor Neurone DiseasesParkinson's disease and PD-related disordersPrion diseaseSpinal muscular atrophy (SMA)Spinocerebellar ataxia (SCA)
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JPND progress to date
• SRIA for a Common European/Global Strategy
• Mapping exercise
• Alignement of national Plans and Strategies
• Phase I Implementation (2012-2014)� Joint Transnational Calls� Joint Transnational Calls
� Alignment Actions
• Operating plan (2015-2020)• Widening participation
• Internationalisation
• Stakeholder involvement
• Monitoring and assessment activities
• Communication and dissemination
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AlbaniaAustria
BelgiumCanadaCroatia
Czech RepublicDenmarkFinlandFrance
GermanyGreeceHungaryIrelandIsraelItaly
JPND is the largest global ND research initiative led by EU countries, with 30 participating
EU member statesAssociated countries Partners countries
Internationalisation: Europe and beyond
Australia
ItalyLuxembourgNetherlands
NorwayPoland
PortugalRomaniaSlovakiaSlovenia
SpainSweden
SwitzerlandTurkey
United Kingdom
In progressIndiaUnited StatesSouth KoreaChinaLAC countries
Bulgaria
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EU-13 and JPND
EU-13 active participants
- Slovakia
- Croatia
- Romania- Romania
EU-13 supporting/acting
participants
- Slovenia
- Poland
- Malta
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Implementing transnational and additional joint calls
For a total of €124 M
Per JTC
Bw 20 and 175 proposals JT
C
Rapid call for Bw 20 and 175 proposals
Bw 122 and 892 teams
95 projects supported
CoE
NJT
CJPcofuND
ERANET cofund
Rapid call for alignement
Rapid call for alignement
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Assessment and Dissemination of JPND project results
Joint Call Secretariat ZonMw JPND CommunicationJoint Call Secretariat ZonMw JPND Communication
REPORTING EVALUATION SUCCESS STORIES• Web dissemination
Collects annual and
final reports from
project coordinators
Collects annual and
final reports from
project coordinators
• Based on these
reports
• ZonMw monitorsand evaluates global
results
• Informs JPND
Communications of
outcomes
• Web dissemination interviews, updated
project fact sheets
• Public engagement Assist coordinators with
media interactions,
presentation of
outcomes at events
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JPND Alignment Actions
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Additional activities
• Research mapping
• Longitudinal cohorts portal
• Experimental models site• Experimental models site
• Recommendations from Action
Groups and community-based
Working Groups to develop ideas
for future activity
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Ongoing Activities: Stakeholder Engagement in JPND
• Patient and Public Involvement (PPI) Advisory Board
Makes visible the perspectives of patients, their relatives, and their caregivers
and provides rapid and frank feedback and early advice
• Communications network to engage the community of JPND stakeholders • Communications network to engage the community of JPND stakeholders
• Engage in a continuous, two-way relationship to advise, support and work
together with stakeholders (e.g., Eurocarers, the European Brain Council).
• Collaborate closely with patient and caregiver organisations (e.g., Alzheimer
Europe, EPDA) to develop and disseminate content that will optimally
facilitate knowledge transfer
• Ensure awareness of the importance of JPND among policy-making stakeholders at the European and national levels
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Impact at the project level : scientific, health, training
• June 1, 2012–May 31, 2015
• 52 partners from 21 countries
• Standardized the sampling and
measurement for the biomarkers measurement for the biomarkers
across most centers in Europe
• 135 publ in peer reviewed journals
• Laboratory training & certification
• Identification of two new biomarkers
• The work will continue in a European
“CSF Society” established by the
members of BIOMARKAPD.
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Impact at the project level : Societaland Policy
Stakeholder database:
nearly 2,000 individual
stakeholders representing
26 countries
In 2015, the JPND website
received:
• 63,941 unique visitors
• 88,897 sessions
• 230,671 page views
Actions aimed at multiple levels within 9 identified stakeholder groups
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Impact at the project level : Cultural and Symbolic
• YouTube
• Flickr
• SlideShare
Active Social Media ConversationG7 WDC, G7 YL, WHO….
• SlideShare
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Impact at the project level : organisational
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
JPND partly supported by FP7-JUMPAHEAD / H2020 JPco-fuND / JPsustaiND
• Marlies Dorlochter - Germany• Mogens Horder - Denmark
Scientific Advisory Board• 15 Members, chosen for scientific
excellence and competence• Chair Thomas Gasser - Germany
Steering CommitteeExecutive Board + • Edvard Beem - Netherlands • Rainer Girgenrath - Germany• Grace Kiser – France
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Impacts at the network level: enduringconnectivity
• Created in 2009 (the trailblazer)• Increasing number of participating countries• Increasing number of research teams participating to JTC and
actions groupsIncreasing the creation and alignement of national plans and • Increasing the creation and alignement of national plans and programs
• Request from the researchers for more interactions withinconsortia
• Creation of a real common pot to support JPND management bw2014 and 2015
• Evidences for a more sustainable network
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Impacts at the network level: capacity building
• Identified in JPND SRIA as enabling activities• Supportive infrastructure and platforms
• Working in partnership with industry
• Working with regulatory organisationsWorking with regulatory organisations
• New international partnerships
• Capacity building
• Education and training
• Support of EU-13 countries in JPsustaiND actions
• Opening of the call to favour inclusion of fellows or
teams from EU-13 in JTC programs
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Impacts at the network level: cultural changes and conceptual impact
• Connection to policy makers• Communication and outreach• Connection to family associations• Progression of national alignment
Octobre 2009Octobre 2015
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Impacts at the network level: Structural impacts
• JPND scheme as a major tool for the achievement of the ERA in the field of neurodegenerative diseases
• Implement a stronger global dimension of the JPND
• Increase the multi-annual commitment of JPND MS
• Foster international progress for research and innovation on neurodegenerative diseases through alignement and the development of novel research tools and infrastructures
• JPND as a reference for European and global knowledge and as an innovation platform in the area of neurodegenerative diseases.
• Urgent need for a sustainable structure for increased efficiency, visibility, commitment and leverage effect.
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Towards a European Research Area
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Keep up to date
• Visit the JPND website:
• http://www.jpnd.eu
• Sign up to the JPND News Feeds
• E-mail us: [email protected]
@JPNDEurope