Slides presented by Derick Mitchell at the European Parkinson's DIsease Association 20th Anniversary Conference, Amsterdam, September 2012. Includes presentation from Parkinson's UK (Stacey Storey)

1. EU Joint Programme -
Neurodegenerative Disease Research
(JPND)
Derick Mitchell, PhD
Amsterdam, Sept 29th, 2012

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 2

3. 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
3

4. 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
4

5. A major societal
« Grand Challenge »
Energy
Climate Change
Food & Health
Neurodegeneration
5

6. Who is JPND?
• Management Board
— 27 countries
— Public research funders, mandated to act
— Chair: Philippe Amouyel (France)
• Scientific Advisory Board
— 15 Members (5 in each domain)
— Chosen for scientific excellence
6

7. Overall 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 ND
• Immediate goals:
— Launch activities that add value to national research efforts
— Leverage additional resources through partnerships
— Link and support national plans with relevance for ND
7

8. Scope of JPND
Scientific Medical
• Animal models • Early diagnosis
Focus on • Biobanks • Prevention
Three Domains • Cohorts/registries • Clinical trials
• Disease pathology
Social
• Health care delivery
• Home automation
• Health economics
• Ethics
Diseases Targeted
Alzheimer’s Disease and other dementias Parkinson’s Disease & related disorders
Motor Neurone Disease Huntington’s Disease
Prion Disease Spinocerebellar Ataxia (SCA)
Spinal Muscular atrophy (SMA)
8

9. Two activities already launched
Centres of Excellence Network in Neurodegeneration Research
(COEN)
• 8 countries - Belgium, Canada, Germany, Ireland, Italy, Slovakia, Spain, UK
• 3.7M€ commitment for first call; 8 projects funded
JPND Joint Transnational Call 2011
• “Optimisation/Harmonisation of biomarkers and their use in clinical
centers”
• 21 countries committed 16M€ total; 4 projects funded
9

10. JPND mapping database
 2011 (annualised) = €370m investment per year
 357 programmes, 1887 smaller projects, 238 bioresources captured
AD
ND general 31.4%
41.7%
MND
3%
SMA
0.7% PD Prion
HD 14.3% 5%
SCA 3.7%
0.2%
10

11. The JPND Research Strategy
• What is it?
— The first holistic ‘roadmap’ for future EU-wide research activity and
investment
— Agreed by 27 JPND-participating countries
— Officially Launched Feb 7th 2012
11

12. JPND Research Strategy
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
SRA Enabling Activities:
JPND will deliver the SRA within the next ten years through a combination of:
 Knowing our research capability  Capacity building
 Opportunities for infrastructure and platforms  Education and training
 Working in partnership with industry  Connection to policy makers
 Working with the regulators  Communication and outreach
 Global partnership
12

13. Stakeholder engagement
STAKEHOLDERS
 Patients and Carers
 Healthcare Professionals
 Policy Makers
 Industry: biopharma, biotech, diagnostics and devices, informatics,
telemedicine, smart home technologies and other healthcare
 Research Charities and Other Funders
STAKEHOLDER CONSULTATION and DATABASE
13

14. Next Steps? - Implementation
JPND Research • Priorities
Strategy established
Phase I • Annual Joint Transnational Funding Call:
Two Joint Calls to launch in Dec 2012
Implementation
• Six Action Groups begin immediately
2012-2014 • Sustainable governing structure for JPND
Phase II •Partnering Initiatives
Implementation (for example with EU,
Industry, Charitable
2014-2020 Funders)
14

15. Patient Involvement in Research
• What is Patient Involvement in Research?
• Why should Patients be involved in ND research?
• How may Patient involvement be implemented in
JPND projects?
15

16. Stages of Patient Involvement
Courtesy of: INVOLVE UK
16

17. Why? Who benefits?
• Raison d’etre of medical research = to help patients
• The public should have a say in determining where money goes
• Clarifies why investment in scientific research is important as a
process for addressing societal problems
• Increases transparency and impact
• If patients and the public understand, then they can support
17

18. How may patient involvement be
implemented in JPND projects?
JPND Action Group on Public and User Involvement
Recommendations from this group....
— Will be presented to the Management Board
— Should be part of the criteria for joint JPND calls
— Should be presented to / adopted by all JPND-participating countries
— Should be included in existing and upcoming National Programs
18

20. Participating in a study
• “I recently volunteered myself as a participant in a study about how cognition
affects gait in people with Parkinson’s.
I am immensely grateful for the extremely helpful
professional advice I was given. I have found that
there is a lot that People with Parkinson’s can gain
from volunteering as participants in research
studies.”
Jeremy, research supporter
20

21. Get to know researchers
21

22. Contributing to projects
• “The group reviews the work done by the researchers – for example we
helped them with their plans to move the project to different parts of the
country, considering the wide range of needs people have in different areas.
I’m able to help out with the research by suggesting how the researchers
can recruit participants effectively.
• I was keen to join the group because I’m very interested in research that can
help people like me now or in the immediate future.”
• Dennis, research supporter
22

23. Raising awareness of research
23

24. Open questions for breakouts
• What are the specific challenges that PD patient organisations face to
actively participate in research?
• Do you know of any examples in your own country of active patient
involvement in research?
• How can JPND improve on its methods to ensure effective patient
involvement in its work?
24