JPND approach to alignment

Natalia Martin, French National Research Agency (JPND MB member)

Workshop on Future Operational Structure for JPI MYBL Implementation Plan

Organized by National Institute of Health Carlos III, ISCIII

Berlin, 5 February 2015

This presentation

• Aim

• to present the actions that JPND has put in place for the

alignment of national plans and initiatives for

Neurodegenerative diseases research

• Content

Short overview of JPND and its SRA

Strategic alignment

JPND level

Action groups

Joint transnational calls

Member country level

Alignment of National Strategies

Alignment of National Activities

ERA-level

Special focus on one

action group set up to

identify areas and

activities that can be

aligned

1. JPND and its SRA

Alzheimer’s disease in Europe

Number of

cases

Societal costs (€)

2010 6,000,000 72,000,000,000

2040 12,000,000 144,000,000,000

0

10

20

30

40

60 70 80 90 100

Age (years)

Ca

se

s / 1

00

Stroke

Dementia

Parkinson's

A major societal challenge for the

coming years

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

Romania

Slovakia

Slovenia

Spain

Sweden

Switzerland

Turkey

United Kingdom

JPND is a global research initiative

Led by EU countries

28 participating

- EU member states

- Associated countries

- Third countries

Increasing coordination of national

research programmes to improve

impact and effectiveness

Declaration of interest in Dec 2008

involving 10 countries

JPND brings together….

• Researchers (Basic, Clinical, Healthcare/Social)

• National Funding Bodies

• National Research Strategies and Investments

JPND history

2009 2012 2014 2015

SRA launched

in Feb 7thJPND

28 countries

Delivering the SRA

Mapping exerciseScoping existing research spend and

infrastructure (academic)

Thematic workshops

(academia)Basic, Clinical and Healthcare themes

Stakeholder meetingsIndustry, charities, funders, policy makers

Patient and carer associations, health care

professionals

Integrating workshopSAB and opinion leaders from thematic and

stakeholder workshops

ConsultationPublic online consultation

Declaration of interest

10 countries

Phase I SRA

Implementation

Annual transnational calls

for proposals

Action groups

Other JPND actions

Common EU strategy

National Plan and Strategies

Communication & Dissemination

Phase II CSA in

preparation: 2

axes

sustainability

and

globalisation

JPND history

2009 2012 2014 2015

SRA launched

in Feb 7thJPND

28 countries

Delivering the SRA

Mapping exerciseScoping existing research spend and

infrastructure (academic)

Thematic workshops

(academia)Basic, Clinical and Healthcare themes

Stakeholder meetingsIndustry, charities, funders, policy makers

Patient and carer associations, health care

professionals

Integrating workshopSAB and opinion leaders from thematic and

stakeholder workshops

ConsultationPublic online consultation

Declaration of interest

10 countries

Phase I SRA

Implementation

Annual transnational calls

for proposals

Action groups

Other JPND actions

Common EU strategy

National Plan and Strategies

Communication & Dissemination

Phase II CSA in

preparation: 2

axes

sustainability

and

globalisation

Scientific

• Animal models

• Biobanks

• Cohorts/registries

• Disease pathology

Social

• Health care delivery

• Home automation

• Health economics

• Ethics

Medical

• Early diagnosis

• Prevention

• Clinical trials

JPND goals

To increase coordinated investment in ND research

aimed at finding causes of disease, developing cures,

and identifying appropriate ways to care for those

with neurodegenerative diseases

• Immediate JPND goals:

• To add value to national investments through coordinated action

• To encourage the development of national research strategies in ND

• To engage in partnership to reach the full potential of JPND

How can JPND reach its goals?

• Alignment of research in Member Countries

• Partnership with the European Commission

• Partnership with Industry

• Partnership with other international organisations

• Involvement of Patients and Public

Defragmentation –

what JPND is all about…

STRATEGIC RESEARCH AGENDA

ALIGNMENT OF EU COUNTRIES

ON COMMON RESEARCH GOALS

Strategic Research Agenda

Launched Feb 7th 2012

• Agreed by 25 Member States + Assoc. Countries

• Thematic priorities for future research:• The origins of neurodegenerative disease

• Disease mechanisms and models

• Disease definitions and diagnosis

• Developing therapies, preventive strategies and interventions

• Healthcare and social care

• Enabling activities for future research:• Knowing our research capability

• Supportive infrastructure and platforms

• Working in partnership with industry

• Working with regulatory organisations

• International partnership beyond Europe

• Capacity building

• Education and Training

• Connection to policy makers

• Communication and outreach

2. Implementation Plan &

Strategic Alignment

Strategic Alignment

Phase I SRA Implementation (2012-2014)

• JPND-level

• Alignment Actions / Action Groups

• Annual Transnational Calls for Proposals

• Member country-level

• Alignment of National Plans and Strategies

• Alignment of National Actions

• ERA-Level

• Synergy between JPND actions and H2020 programme

SAB during the

implementation plan

• The Chair (renewed in 2014) attends the MB

meetings

• The Chair participates in the update of the

SRA, advises on the scientific

appropriateness of the JTCs, participates in

dissemination activities, in action groups….

2.1. Action groups & JTCs

Alignment Actions / Action Groups

• To determine transnational research needs and opportunities

• Palliative Care (chair: E. Connolly)

• Animal and Cell Models (chair: A. Maggi)

• Assisted Living Technologies (chair J. Hoogendam)

• Longitudinal Cohort Studies (chair: R. Buckle)

• To promote engagement, commitment and partnerships

• Engagement, partnership with EC + non-EU countries (chair: P. Amouyel)

• Engagement and Partnership with Industry (chair: A. Maggi)

• User and Public Involvement in ND Research (chair: M. Horder)

• Linkage + Alignment of National Plans and Initiatives (chair: E. Hirsch)

2.2.1. Focus on Action Group for

the Alignement of National

Activities

Objectives of the Action group

for the Alignment of National

Activities

• To identify existing national resources and

initiatives where potential exists for linking,

harmonization and sharing of knowledge to

address research questions specific to ND

• To identify approaches that may facilitate wider

access to national technology platforms or

infrastructures such as biobanking, neuroimaging

or informatics capabilities, and promote the

sharing of data and resources

Processus

Jan2013 End 2014

Questionnaire to complete information

MB representatives (43 organizations in

27 countries)

Medico-scientific issues with potential for alignment: Infrastructures, Centers of Excellence, Training programs, Imaging facilities, Repository for biological samples, Clinical centers networking, Specialized centers for translational research

Neuroimaging was selected as a priority by the MB

Analysis of

previous JPND

mapping reports

Alignment in Neuroimaging

Aug2013 April2014

Group of 18 experts from 14

countries were appointed

Four videoconferences with

experts: consensus on six

major topics of potential

alignment

Conclusions and

report

Proposed action plan

Phase 1

• To launch a call for a JPND rapid action to establish a

series of community-led working groups to establish

‘best practice’ guidelines and methodological

frameworks to develop the infrastructures for brain

image analysis

• Possible topics for the working groups already

identified

• This methodology has been employed for the studies

of cohorts and will allow the whole community to

identify the major barriers for cooperation in the field

of imaging across JPND countries

Proposed action plan

Phase 2

• Based on the outcomes of the community-led

working groups, a second call to support global

and harmonized platforms for brain image

analysis in neurodegenerative disorders should

be launched by JPND

• This call could include not exclusively the

following topics: Harmonization of acquisition

for current markers; Simplification of web

access to image analysis environments;

Innovative PET molecular markers; Innovative

UHF MR markers

Similar process for other AG

• Mapping excercisecomprehensive

landscape

• Workshop with experts

• Identification of gaps and unmet needs

• Recommendations to MB

• MB decides which actions should be

implemented, for ex.

• JTC for Working Groups (AG cohorts)

• PPI in JTC 2015

2.2.2. Other Action Groups & JTCs

Action Group Recommendations

Report of the Action Group on

Longitudinal Cohort Studies

● JPND actions: for ND research on longitudinal cohort studies

● general population-based cohorts

● targeted (preclinical) and disease-focused cohorts

● 169 European studies examined

● Annexes provide detail on:

24 exemplar studies

33 studies on imaging measures

weblinks / references for all 169 cohorts

● Recommendations span

● co-ordination

● funding

● policy

Annual Calls for Proposals

Centres of Excellence in Neurodegeneration (CoEN)

YearTotal fund available

Research Area No. of Projects

2011(pilot)

€16MOptimization of biomarkers + harmonization of their use

4

2012 €18M Risk and Protective Factors 5

2012 €11M Evaluation of Healthcare 6

2013 €12M Cross-Disease Analysis 10

2013 €11M Preventive Strategies 5

2014 €0,5M Working Groups Cohort Studies 10

2015 €30MLongitudinal Cohort Approaches;Advanced Experimental Models;

Risk and Protective Factors.

Open Call

2011 €6MPhase I : common resources and methodological

approaches8

2012-13 €8M Phase II : “Pathfinder” projects 5

AG

Encouraging deeper levels of

collaboration for research groups

JPND Online Partnering Tool

2.2. Alignment of National

Strategies

Member-country-level

Alignment of National 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, both

• Since deciding to participate in JPND, an increasing number of

countries are working towards developing SRAs

• Specific JPND actions aimed at encouraging countries to develop

national research strategies in ND

Support at the JPND-level

• Supportive Documents available on JPND Extranet

• MB Questionnaires of initiatives in ND area at national +

European level

• Examples of existing national SRAs

• Examples of national consultations + processes that have

facilitated SRA development

• Tools and templates to assist JPND participants in development

of SRAs

• JUMPAHEAD CSA funds made available

• 1000 euro per country for those who require JPND support for

activities at the national level

• Facilitated potential participation of JPND reps.

• e.g. EB / MB / SAB members in activities at the national leve

MB meeting “closed sessions”

• All JPND Member Countries given opportunity to present their

national context to the MB (“closed session”)

Discussion Topic: How to convince national stakeholders to align

their plans and strategies?

1. What arguments can be used at the national level to convince

stakeholders to align national plans?

2. How successful have efforts been to date?

3. How could JPND contribute to addressing the main challenges

to alignment?

JPND Member Countries

Have ND-related strategies

No plans to develop strategiesOct 2009

JPND Member Countries

Have ND-related strategies

Promoting discussions

Processing ND-related strategies

No plans to develop strategiesFeb 2014

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

start national network in biomarkers for Alzheimer’s + Parkinson’s

Barriers to alignment

• Not all national agencies responsible for ND funding are

involved in JPND

• Only some countries use top-down funding methods. Difficult to

identify areas of focus for alignment without top-down in all

JPND countries

• Few JPND countries have specific national or regional policy

frameworks for ND

• evolution of policy for ND falls into different, and sometimes disconnected,

health and social care policy arenas

2.3. Alignment at the ERA-

level

Partnership with the EC

• ERA-NET Co-Fund JPco-fuND:

• “Establishing synergies between the Joint Programming on

Neurodegenerative Diseases Research and Horizon 2020”.

• ERA-NET JPco-fuND will:

• coordinate national and regional programmes for research in the area of ND

diseases research by implementing a transnational call with EU co-funding

• JPND joint transnational co-funded call was launched on January 8th,

2015 in partnership with the European Commission under the ERA-NET

Co-fund scheme on these topics:

• Longitudinal Cohort Approaches;

• Advanced Experimental Models;

• Risk and Protective Factors.

World Demential Council

following the G8 summit on

dementia

• In response, the World Demential Council was formed for research on

Alzheimer’s and dementia:

• Council members consist of world leaders in dementia research and

members met for the first time on 30 April 2014.

• Prof. Philippe Amouyel, Chair of the JPND Management Board, is a member

of the council.

• The council objectives are to speed up dementia research and to increase

investment in the area with primary focus on three areas: Integrated

development, Finance and incentives, and Open science.

Partnership with

non-European countries

• JPND Third Country Policy• Canada became a full partner in May 4th 2014

• Ongoing discussions with the USA

• Discussion initiated with the G8 countries

Learn more on JPND websitehttp://www.neurodegenerationresearch.eu

http://www.jpnd.eu

Keep up to date

• Sign up to the JPND News Feeds

• Follow JPND Progress pages

• E-mail us: secretariat@jpnd.eu

• Follow us on Twitter: @JPNDEurope

Thank you!