Joint Programming in Neurodegenerative Disease Research ... · 22-23 November 2016 Impacts Coordinating approaches to research across the globe Philippe Amouyel ... Overcoming barriers

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

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

Ten Grand Challenges

Neurodegeneration

Microbial resistance

Healthy diet

Seas and Oceans

Agriculture

Climate

Culture

Water

Longevity

Urban development

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.

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

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

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)

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

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

EU-13 and JPND

EU-13 active participants

- Slovakia

- Croatia

- Romania- Romania

EU-13 supporting/acting

participants

- Slovenia

- Poland

- Malta

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

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

JPND Alignment Actions

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

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

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.

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

Impact at the project level : Cultural and Symbolic

• Twitter

• YouTube

• Flickr

• SlideShare

Active Social Media ConversationG7 WDC, G7 YL, WHO….

• SlideShare

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

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

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

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

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.

Towards a European Research Area

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