Natalia Martin, ANR France, delivered a JPND presentation to the More Years, Better Lives JPI on "Linkage and Alignment", in Berlin on February 5th, 2015

1. 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

2. 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

3. 1. JPND and its SRA

4. 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)
Cases/100
Stroke
Dementia
Parkinson's
A major societal
challenge for the
coming years

5. 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

6. JPND brings together….
• Researchers (Basic, Clinical, Healthcare/Social)
• National Funding Bodies
• National Research Strategies and Investments

7. JPND history
2009 2012 2014 2015
SRA launched
in Feb 7th
JPND
28 countries
Delivering the SRA
Mapping exercise
Scoping existing research spend and
infrastructure (academic)
 Thematic workshops
(academia)
Basic, Clinical and Healthcare themes
 Stakeholder meetings
Industry, charities, funders, policy makers
Patient and carer associations, health care
professionals
 Integrating workshop
SAB and opinion leaders from thematic and
stakeholder workshops
 Consultation
Public 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

8. JPND history
2009 2012 2014 2015
SRA launched
in Feb 7th
JPND
28 countries
Delivering the SRA
Mapping exercise
Scoping existing research spend and
infrastructure (academic)
 Thematic workshops
(academia)
Basic, Clinical and Healthcare themes
 Stakeholder meetings
Industry, charities, funders, policy makers
Patient and carer associations, health care
professionals
 Integrating workshop
SAB and opinion leaders from thematic and
stakeholder workshops
 Consultation
Public 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

9. 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

10. 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

11. Defragmentation –
what JPND is all about…
STRATEGIC RESEARCH AGENDA
ALIGNMENT OF EU COUNTRIES
ON COMMON RESEARCH GOALS

12. 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

13. 2. Implementation Plan &
Strategic Alignment

14. 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

15. 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….

16. 2.1. Action groups & JTCs

17. 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)

18. 2.2.1. Focus on Action Group for
the Alignement of National
Activities

19. 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

20. 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

21. 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

22. 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

23. Similar process for other AG
• Mapping excercisecomprehensive
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

24. 2.2.2. Other Action Groups & JTCs

25. Action Group Recommendations

26. 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

27. Annual Calls for Proposals
Centres of Excellence in Neurodegeneration (CoEN)
Year
Total fund
available
Research Area No. of Projects
2011
(pilot)
€16M
Optimization 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 €30M
Longitudinal Cohort Approaches;
Advanced Experimental Models;
Risk and Protective Factors.
Open Call
2011 €6M
Phase I : common resources and methodological
approaches
8
2012-13 €8M Phase II : “Pathfinder” projects 5
AG

28. Encouraging deeper levels of
collaboration for research groups
JPND Online Partnering Tool

29. 2.2. Alignment of National
Strategies

30. 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

31. 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

32. 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?

33. JPND Member Countries
Have ND-related strategies
No plans to develop strategies
Oct 2009

34. JPND Member Countries
Have ND-related strategies
Promoting discussions
Processing ND-related strategies
No plans to develop strategies
Feb 2014

35. 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

36. 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

37. 2.3. Alignment at the ERA-
level

38. 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.

39. 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.

40. 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

41. Learn more on JPND website
http://www.neurodegenerationresearch.eu
http://www.jpnd.eu

42. 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

43. Thank you!