EU Joint Programme -Neurodegenerative Disease Research (JPND)
Derick Mitchell, PhD Amsterdam, Sept 29th, 2012
2
0
10
20
30
40
60 70 80 90 100
Age (years)
Ca
se
s / 1
00
Stroke
Dementia
Parkinson's
From Rocca W et al, Eurodem
Frequence
of Neurodegenerative Diseases
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Ocean energy
Hydrogen and
fuel cells
CO2 capture and storage
Wind energy
Biomass - Bioenergy
GeothermalGrids electricity
Cancer
Brain diseases
Dementia - Alzheimer
Nanotechnologies
Biotechnologies
Industrial
biotechnology
Information and communication
technology
Space
Pollution and environmental
protection
Polar programs
Agriculture Production
and Technology
Nuclear fusion
Photovoltaic
Concentrated solar thermal
Civil security
nanotechnology’s
potential risks
Rare diseases
Low coordination/ High fragmentation Low fragmentation / High coordination
Investi
ng
less
than
th
e
US
Investi
ng
mo
re
than
th
e
US
Investi
ng
as
mu
ch
as t
he U
S
Medium
Research efforts are fragmented
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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
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A major societal
« Grand Challenge »
Energy
Neurodegeneration
Climate Change
Food & Health
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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
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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
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Scientific
• Animal models • Biobanks • Cohorts/registries • Disease pathology
Social
• Health care delivery • Home automation • Health economics • Ethics
Medical
• Early diagnosis • Prevention • Clinical trials
Focus on
Three Domains
Scope of JPND
Diseases Targeted
Alzheimer’s Disease and other dementias Motor Neurone Disease Prion Disease
Parkinson’s Disease & related disorders Huntington’s Disease Spinocerebellar Ataxia (SCA) Spinal Muscular atrophy (SMA)
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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
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JPND mapping database
2011 (annualised) = €370m investment per year
357 programmes, 1887 smaller projects, 238 bioresources captured
PD 14.3%
Prion 5%
MND 3%
AD 31.4% ND general
41.7%
SMA
0.7%
SCA 0.2%
HD 3.7%
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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
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JPND Research Strategy
Knowing our research capability
Opportunities for infrastructure and platforms
Working in partnership with industry
Working with the regulators
Global partnership
Capacity building
Education and training
Connection to policy makers
Communication and outreach
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:
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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
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Next Steps? - Implementation
JPND Research Strategy
• Priorities established
Phase I Implementation
2012-2014
• Annual Joint Transnational Funding Call: Two Joint Calls to launch in Dec 2012
• Six Action Groups begin immediately
• Sustainable governing structure for JPND
Phase II Implementation
2014-2020
•Partnering Initiatives (for example with EU, Industry, Charitable Funders)
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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?
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Stages of Patient Involvement
Courtesy of: INVOLVE UK
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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
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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
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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
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Get to know researchers
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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
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Raising awareness of research
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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?