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

3

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?