This document summarizes information from a presentation about the Joint Programming Initiative on Neurodegenerative Diseases (JPND). It discusses the increasing prevalence of neurodegenerative diseases with age. It outlines JPND's goals of developing new treatments and improving care approaches. It describes JPND's organization, research strategy development process, initial funding commitments, and next steps of implementing the research strategy over five years through working groups and task forces.

1. Joint Programming Initiative on
Neurodegenerative Diseases
Prof. Philippe Amouyel
Chair, JPND Management Board

2. Frequence
of Neurodegenerative Diseases
40
30 Dementia
Cases / 100
20
Stroke
10
Parkinson's
0
60 70 80 90 100
Age (years)
From Rocca W et al, Eurodem

3. Population
Projections and Ageing
30 More developed regions 30 Less developed regions
% of total population
60 +
20 20
60 +
10 70 +
10
70 +
80 +
80 +
0 0
1950 1970 1990 2010 2030 1950 1970 1990 2010 2030
Calendar year Calendar year

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

5. Research challenges
• 30% of healthy elderly subjects already have
Alzheimer pathology
Cognitively normal subject aged 72 years
with Alzheimer pathology (red)

6. A major societal challenge
for the coming years

7. Research efforts are fragmented
Ocean energy
Investing more
than the US
Concentrated solar thermal
Nuclear fusion
Pollution and environmental
protection
CO2 capture and storage
nanotechnology’s Photovoltaic
potential risks Hydrogen and
Biomass - Bioenergy
Agriculture Production fuel cells
Wind energy
much as the US
and Technology
Investing as
Polar programs
Nanotechnologies
Geothermal
Grids electricity
Cancer
Space
Information and communication
technology
Civil security
Investing less
than the US
Biotechnologies
Brain diseases
Industrial
biotechnology
Low coordination/ High fragmentation Medium Low fragmentation / High coordination
Dementia - Alzheimer
Rare diseases

8. A European Mobilization
 Informal meeting on competitiveness for Ministers of
Research, Versailles, 17th July 2008
 Chaired by the French Minister of Higher Education and
Research, Mrs Valérie Pécresse
“to put the issue of neurodegenerative diseases in the top
priorities of the agenda of the European Council.”
“to launch a joint programme of research on these diseases,
combining socio-economic and medico-biological issues.”

9. What is Joint Programming?
• A new Member States-led initiative in Europe
which aims to address “grand challenges” to
EU society by coordinating national research
programmes within the EU 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

10. A major societal
« Grand Challenge »
Energy
Climate Change
Food & Health
Neurodegeneration

11. Joint Programming - a definition
European countries engaging
• voluntarily and on a variable geometry basis
to tackle a major societal question
• in the definition, development and
implementation of a common strategic
research agenda
• based on a common vision on how to address
major societal challenges.

12. What are the goals?
To tackle the challenge of Alzheimer’s and other
neurodegenerative diseases, the goals of the JPND
Research Strategy are to
• 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

13. Organisation
• Management Board
• 25 countries represented
• Mandated to act
• Chair Prof Philippe Amouyel (France)
• Executive Board
• Vice-Chair Prof Adriana Maggi (Italy)
• Enda Connolly (Ireland)
• Edvard Beem (The Netherlands)
• Mogens Horder (Denmark)
• Scientific Advisory Board
• 15 Members (5 in each domain)
• Chosen for scientific excellence

14. JPND Research Strategy
• JPND Research Strategy – what is it?
• A holistic ‘roadmap’ for future EU-wide activity and investment
• not a review of the field, not a list of calls for proposals
• Delivery will take into account;
• SAB recommendations – based upon outputs from 4
scientific/strategic workshops
• National and European research portfolios
• Broad consultation with stakeholder groups

15. Delivering JPND Research Strategy
• 1. Mapping exercise of National and European programmes
• 2. Strategic prioritisation
• three thematic workshops (basic/clinical/healthcare)
• Stakeholder discussions
• fourth workshop to integrate outputs, incorporate stakeholder
perspectives
• 3. Consultation exercise (website publication)
• 4. Delivery taking into account
• Outputs from scientific workshops
• Consultation
• Discussion at MB (to incorporate funder, political & policy
considerations)

16. 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
€0.29 billion – 69 agencies from 21 countries
Smaller Investments 1887
+ EC inc. ERC covering 1756 projects
€1.33 billion - 41 funding agencies
Major Programmes 357
(13 countries + EC inc. 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

17. ND research spend by disease
area (annualised)
AD
31.4%
ND general
41.7%
MND
3%
SMA
0.7% PD Prion
HD 14.3% 5%
SCA 3.7%
0.2%

18. Implementation and test-case
• While waiting for JPND Research Strategy delivery,
the Scientific Advisory Board recommended launching
rapid actions
• "Neurodegenerative Diseases - a call for European
research projects for the optimisation of biomarkers
and harmonisation of their use between clinical
centres”
• Launched by JPND on 13 May 2011
• 21 countries participating
• Commitment for 16 M€
• Four projects retained on 7th Dec 2011

19. Other actions
• The Centres of Excellence Network in Neurodegeneration
Research initiative is considered as part of the JPND
• initially DZNE-MRC-CIHR
• now Germany, UK, Ireland, Canada, Belgium, Italy
• - Topic : Biomarkers, Imaging, Animal models
• - 4M€
• The JPND supports the “JPIs TO CO-WORK” proposal
submitted in February 2011 to “Refine and promote the
adoption of European-level guidelines in the domain of the
Framework conditions for JPI”
• The JPND participates in the pilot European Innovation
Partnership on Active and Healthy ageing

20. Towards Implementation
Prof. Philippe Amouyel
Chair, JPND Management Board

21. Implementation – 5 Steps
• 1) Create List of priorities from JPND Research Startegy
proposals
• 2) Organise thematic working groups
• 3) Create List of opportunities
• suited for implementation
• 4) Organise specific Task forces
• 5) Support Implementation

22. Next Challenges
• Implementation of the SRA
• Developing national SRA
• Funding commitment based on a 5 year period
• Leverage effect
• Based on existing mechanisms
• Scale-up funding commitment
For one specific call we obtained 16M€ commitment, for
the whole SRA, we hope to gather larger amounts
based on a country commitment accompanied by other
participations (EU, Industry, stakeholders…)

23. 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 Feed
• Follow us on Twitter: @JPNDEurope
• E-mail us: secretariat@jpnd.eu