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 Parkinsons 0 60 70 80 90 100 Age (years)From Rocca W et al, Eurodem 2

3.
Research efforts are fragmented Ocean energyInvesting 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 energymuch as the US and Technology Investing as Polar programs Nanotechnologies Geothermal Grids electricity Cancer Space Information and communication technology Civil securityInvesting 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 • PreventionThree Domains • Cohorts/registries • Clinical trials • Disease pathology Social • Health care delivery • Home automation • Health economics • EthicsDiseases 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 launchedCentres 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 fundedJPND 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 ADND 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 StrategyThematic 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 careSRA 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 engagementSTAKEHOLDERS 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 FundersSTAKEHOLDER CONSULTATION and DATABASE 13

14.
Next Steps? - ImplementationJPND 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 beimplemented in JPND projects?JPND Action Group on Public and User InvolvementRecommendations 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

19.
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

20.
Get to know researchers 21

21.
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

22.
Raising awareness of research 23

23.
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