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Joint Programming in
Neurodegenerative Disease Research (JPND)
Coordinating approaches to research across Europe
Derick Mitchell
30/5/2014
A global health and economic emergency
• Between now and 2050, over 680 million new
cases of dementia will be diagnosed 1
• Global cost of dementia in 2010 is $604 billion -
1% of global GDP 2
1 – World Alzheimer Report 2012
2 – WHO Dementia Report 2012
A tidal wave of neurodegeneration?
• There is no treatment
for Alzheimer’s
disease
• Alzheimer’s Disease:
• the only top 10 cause of death
that cannot be cured, prevented,
• or even slowed!
• The risk factors are
• still unknown!
We cannot tackle neurodegenerative
diseases by acting as single countries
Albania
Austria
Belgium
Canada
Croatia
Czech Republic
Denmark
Finland
France
Germany
Greece
Hungary
Ireland
Israel
Italy
Luxembourg
Netherlands
Norway
Poland
Portugal
Romania
Slovakia
Slovenia
Spain
Sweden
Switzerland
Turkey
United Kingdom
JPND is the largest global ND research initiative
led by EU countries, with 28 participating
EU member states
Associated countries
Third countries
Increasing coordination of national
research programmes to improve
impact and effectiveness
Joint Programming in Research
• Close to 85% of public research funds in the EU
are spent independently by Member States
• Countries working together to identify the core
research questions (or the next societal challenge)
• Voluntarily, A-la-carte, Variable Geometry
• Definition, development and implementation of
common strategic research agenda
Ten Joint Programming Initiatives
1. Alzheimer and other Neurodegenerative Diseases (JPND)
2. A Healthy Diet for a Healthy Life
3. More Years, Better Lives - Demographic Change
4. Antimicrobial Resistance
5. Agriculture, Food Security and Climate Change
6. JPI Climate
7. Cultural Heritage
8. Urban Areas
9. Water Challenges
10. Healthy and Productive Seas and Oceans
JPND brings together
• Researchers (Basic, Clinical, Healthcare/Social)
• National Funding Bodies
• National Research Strategies and Investments
Neurodegenerative Diseases?
• The neurodegenerative diseases that JPND focuses on are:
• Alzheimer’s disease (AD) and other dementias
• Parkinson’s disease (PD) and PD-related disorders
• Prion disease
• Motor neurone diseases (MND)
• Huntington’s Disease (HD)
• Spinocerebellar ataxia (SCA)
• Spinal muscular atrophy (SMA)
The JPND goals
To tackle the challenge of Alzheimer’s and other neurodegenerative diseases,
the goals of the JPND Research Strategy are:
• 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
Scope of JPND
Scientific
• Animal models
• Biobanks
• Cohorts/registries
• Disease pathology
Social
• Health care delivery
• Home automation
• Health economics
• Ethics
Medical
• Early diagnosis
• Prevention
• Clinical trials
Defragmentation
– what JPND is all about…
STRATEGIC RESEARCH AGENDA
ALIGNMENT OF EU COUNTRIES
ON COMMON RESEARCH GOALS
JPND Research Strategy (SRA)
• Agreed by all JPND Member States + Assoc. Countries
• Officially Launched Feb 7th 2012
• 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
• 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
How can JPND reach its goals?
• Alignment of research in Member Countries
• Involvement of Patients and Public
• Partnership with the European Commission
• Partnership with Industry
• Partnership with other international organisations
JPND Actions to date
• Common European Strategy
• Phase I SRA Implementation (2012-2014)
• Annual Transnational Calls for Proposals
• Action Groups
• National Plans and Strategies
• Communication + Dissemination
SRA Implementation (2012-2014)
Annual Calls for Proposals
Centres of Excellence in Neurodegeneration (CoEN)
Year Total fund
available
Research Area No. of Projects
2011
(pilot)
€16M Optimization of biomarkers
+ harmonization of their use
4
2012 €18M Risk and Protective Factors 5
2012 €11M Evaluation of Healthcare 6
2013 €12M Cross-Disease Analysis Closed Feb 2014
2013 €11M Preventive Strategies Closed Feb 2014
2011 €6M
Phase I : common resources and methodological
approaches
8
2012-13 €8M Phase II : “Pathfinder” projects 5
Action Groups
• To determine transnational research needs and opportunities
• Palliative Care
• Animal and Cell Models
• Assisted Living Technologies
• Longitudinal Cohort Studies
• To promote engagement, commitment and partnerships
• Engagement and partnership with the EC
• Engagement and Partnership with Industry
• Public +Patient Involvement in ND Research
• Linkage + Alignment of National Plans and Initiatives
Relevance to Chiropractic?
Health and Social Care Research
• Understanding individual care needs (patients + carers) and
management of disease, conditions or ill health
• Research into the provision and delivery of health and social care
services and infrastructure, health economics, health policy, ethics,
research governance and studies of research design, measurements
and methodologies
• Research into social or societal impact of disease
Health & Social Care Research
• Eight priorities identified in SRA
• First priority:
• Evaluation of current healthcare and social care pathways relevant to ND
• 2012 Joint Transnational Call:
• “European research projects for the evaluation of health care policies,
strategies and interventions for Neurodegenerative Diseases”
Six projects funded – began in 2013
• Acces to Timely Formal Care
Frans Verhey, Maastricht University, Netherlands
• A Programme for ALS Care in Europe
Orla Hardiman, Trinity College Dublin, Ireland
• Care for Late Stage Parkinsonism
Anette Schrag, University College London, United Kingdom
• Adaptive Implementation and Validation of the positively evaluated Meeting Centers
Support Programme for people with dementia and their carers in Europe
Rose-Marie Dröes, VU University Medical Center Amsterdam, Netherlands
• Research to Assess Policies and Strategies for Dementia in the Young
Alexander Kurz, Technical University Munich, Germany
• Strategies and interventions for vital decisions in Amyotrophic Lateral Sclerosis in
• different European countries
Dorothée Lulé, University of Ulm, Germany
Health & Social Care Research
• Barriers to Implementation at pan-EU level
• Weak or non-existent national research infrastructure and capacities
• Clear differences in the ways health and social care research and services
are established in JPND member countries
• 2014 Action Plan - Key Elements:
• Networking and Coordination
• Capacity Building
• Patient and Public Involvement
• Translational Research and Innovation
Report of the Action Group on
Longitudinal Cohort Studies
● JPND actions: for ND research on longitudinal cohort studies
● general population-based cohorts
● targeted (preclinical) and disease-focused cohorts
● 169 European studies examined
● Annexes provide detail on:
 24 exemplar studies
 33 studies on imaging measures
 weblinks / references for all 169 cohorts
● Recommendations span:
● co-ordination, funding, policy
Recommendations for delivery
(Coordination)
• Coordination and development of best practice
• A series of JPND workshops to address challenges such as:
• Preclinical stages of ND (methodologies, tools, measures e.g. imaging)
• Cognition, behaviour & function: definitions of functional change, trajectory,
outcomes
• Data handling: integration of -omics data, sharing big datasets
• Cohort alignment: where can data be pooled to provide benefit
• Clinical data linkage: how to exploit, harmonise, score, access
• Exploiting intervention studies of potential risk factors (vascular, T2D) to
address ND risk as an outcome
“Mini” European Research Area
• JPND can harness international cooperation/partners
• Encourage development of national-level SRAs
• Platform for European and Global Knowledge and Innovation in ND
• Knowledge Hubs – networking and capacity building
Declaration from G8 summit on
dementia
• In response, the OECD is launching a project in 2014 for research on
Alzheimer’s and dementia:
• Aimed at strengthening international collaboration and promote data sharing at
the international level
• JPND invited to join the project Advisory Group
• OECD plans a G8 mapping based upon JPND mapping methodology
Emerging national
JPND-related activities
• The Netherlands
• Research a major theme as part of National Deltaplan for Dementia
“…. the Deltaplan will follow closely the JPND strategic research agenda and will strengthen
the international position of the Netherlands for both research and industry”
Edith Schippers, Minister for Health, Welfare and Sport
• United Kingdom
• David Cameron’s “Prime Minister’s challenge on dementia” includes specific references to
continued support for COEN and JPND research
• Ireland
• National SRA developed to inform participation in JPND
• Researchers used participation in 2011 JPND Biomarkers call to start national network
in biomarkers for Alzheimer’s + Parkinson’s
Encouraging deeper levels of
collaboration for research groups
JPND Online Partnering Tool
Keep up to date
• Visit the JPND website:
• http://www.jpnd.eu
• Sign up to the JPND News Feeds
• E-mail us: secretariat@jpnd.eu
• Follow us on Twitter
@JPNDEurope
Thank you!
• The effect of lifestyle on the prevention of neurodegenerative
diseases has been recognized and is considered to be
supported by solid evidence, but individual effects are small.
Further research into this area, in particular with respect to
factors promoting healthy aging is therefore warranted.
Nevertheless, research in the improvement of symptomatic
treatments must not be neglected for the time being.
What are the grand challenges?
Energy
Neurodegeneration
Climate Change
Food & Health
"If you think research is expensive,
try disease!"
- Mary Lasker
JPND currently partly supported by FP7-JUMPAHEAD (GA. 260774)
Management Board
• 28 countries represented
• Members mandated to act
• Chair Philippe Amouyel - France
Executive Board
• Vice-Chair Adriana Maggi - Italy
• Robin Buckle - UK
• Mogens Horder - Denmark
• Marlies Dorlochter - Germany
Scientific Advisory Board
• 18 Members, chosen for scientific excellence
• Industry and Patient Organisations represented
Organisation
Steering Committee
Executive Board +
• Rainer Girgenrath - Germany
• Edvard Beem - Netherlands
Health Care & Social Care
Challenges for implementation at pan-EU level:
• Identified opportunities often linked to the structure of, and potential changes to,
health and social care systems across Europe.
• Marked differences exist between and within JPND countries in the ways that
treatment, care and support are financed, commissioned, delivered and regulated.
• Large differences exist between countries with respect to cultural factors and
influences, as well as the most relevant stakeholders to be engaged to implement
outcomes from health and social care research.
• Many relevant national-level stakeholders not regularly engaged with research
community (regulators, healthcare providers).
• National legislative compliance
• Agencies responsible for funding related to ND health and social care research are
not all involved in JPND
• The ability of pan-European efforts to raise capacities in JPND countries, in
particular those with little or no existing research in this area, is not altogether clear.
Top three priorities:
1. Cost-effectiveness/economic evaluations
2. Identification of subgroups likely to respond to treatment
3. Initiation and promotion of collaborative research efforts
What is being done?
• Cause: interplay between biological, environmental, social factors
• Huge pharmaceutical effort towards prevention and cure remains elusive
• Pharmacological treatment risk of side effects
• Psychosocial interventions increasing
• Since the launch of the SRA, several trials applying different anti-aggregation
approaches have been initiated. Among them, studies involving genetic cases in pre-
symptomatic disease stages are seen as particularly promising. Their outcome is
awaited and will have a major impact on future developments.
Trends of reduced dementia occurrence
Jan 28, 2014 Bengt Winblad, Karolinska Instituet, Sweden 43
• At least five studies provide evidence suggesting that incidence of dementia may
have decreased over the last 20 years (still, prevalence is increasing):
• Rocca et al. Trends in the incidence and prevalence of Alzheimer’s disease, dementia, and cognitive impairment in the United States. Alzheimer’s &
Dementia 2011
• Schrijvers et al. Is dementia incidence declining? Trends in dementia incidence since 1990 in the Rotterdam study. Neurology 2012
• Qiu et al. Twenty-year changes in dementia occurrence suggest decreasing incidence in central Stockholm, Sweden. Neurology 2013
• Christensen et al. Physical and cognitive functione of people older than 90 years: a comparison of two Danish cohorts born 10 years apart. The
Lancet 2013
• Matthews et al. A two-decade comparison of prevalence of dementia in individuals aged 65 years and older from three geographical areas of
England: results of the Cognitive Function and Ageing Study I and II. The Lancet 2013
• Why? - Better awareness / treatment of lifestyle-related risk factors
• Successful Prevention!
44
Healthy brain Alzheimer brain
?
Risk factors in AD; possible prevention
What can we do ourselves to at
least delay Alzheimer’s Disease onset?
Active lifestyle
- Physical, Social, Mental
Control of co-morbidity
- Diabetes, Hypertension,
Hypercholesterolemia
Nutrition
- ”Healthy” food intake
Some tested ”drugs” in prevention trials:
- Anti-inflammatory (eg NSAIDs)
- Gingko Biloba
- Vitamin B, C, D and E
- Estrogens
- ”Medical food”
- Souvenaid, Axona, Nestlé, Smartfish,
Jan 28, 2014 Bengt Winblad, Karolinska Instituet, Sweden
Epidemiology/Risk factor research;
Intervention – the way forward to 2025
Jan 28, 2014 Bengt Winblad, Karolinska Instituet, Sweden
There is no treatment for Alzheimer’s disease
and the risk factors are still unknown
• In Europe, 1 out of 5 people may develop Alzheimer’s
disease
• It is estimated that 35.6 million people worldwide are suffering
from dementia in all its forms in 2011
• This number is estimated to nearly double every 20 years,
possibly reaching 65.7 million in 2030
• Europe accounts for over 28 % of the total number of persons
suffering from dementia, placing it second only to Asia (with
35 %), while of all the world's regions western Europe has the
highest proportion of sufferers (19 %)
JPND-supported projects
• Biomarker Harmonization
• BIOMARKAPD: Standardizing biomarker measurements across Europe for
Alzheimer’s and Parkinson’s Disease
• Risk Factors
• COURAGE-PD: Risk factor assessment for genetics and environment in
Parkinson‘s Disease
• STRENGTH: Survival, Trigger and Risk, Epigenetic, Environmental and
Genetic targets for Motor Neuron health
• Healthcare Evaluation
• ALS-CaRE: A programme for ALS care in Europe
• RHAPSODY: Research to access policies and strategies for dementia
in the young
What are the conditions that create a ripe
environment for innovation?
Conscious of its progress,
proud of its past, sure of its future,
day science advances
in light and glory
Joint Transnational Calls
Night science wanders blind.
It hesitates, stumbles, recoils, sweats,
wakes with a start. […]
There is no way to predict whether
night science will ever become day
science; whether the prisoner will
emerge from the darkness.
Centres of Excellence
in Neurodegeneration
Of flies,
mice and man
Francois
Jacob
Partnership with the EC
• Establish a programme of co-investment
• Work towards a sustained increase of investments from JPND partners
• Leverage the value of investments and resources at both national and EC level, to the
benefit of Europe
Examples:
• Synergy between JPND actions and Horizon 2020 programme
• Linking national plans through actions to engage national infrastructures
• Development and long term sustainability of European cohorts
• Unlocking national capability on fellowship programs

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European Chiropractor's Union - 2014 - Dublin

  • 1. Joint Programming in Neurodegenerative Disease Research (JPND) Coordinating approaches to research across Europe Derick Mitchell 30/5/2014
  • 2. A global health and economic emergency • Between now and 2050, over 680 million new cases of dementia will be diagnosed 1 • Global cost of dementia in 2010 is $604 billion - 1% of global GDP 2 1 – World Alzheimer Report 2012 2 – WHO Dementia Report 2012
  • 3. A tidal wave of neurodegeneration? • There is no treatment for Alzheimer’s disease • Alzheimer’s Disease: • the only top 10 cause of death that cannot be cured, prevented, • or even slowed! • The risk factors are • still unknown!
  • 4. We cannot tackle neurodegenerative diseases by acting as single countries Albania Austria Belgium Canada Croatia Czech Republic Denmark Finland France Germany Greece Hungary Ireland Israel Italy Luxembourg Netherlands Norway Poland Portugal Romania Slovakia Slovenia Spain Sweden Switzerland Turkey United Kingdom JPND is the largest global ND research initiative led by EU countries, with 28 participating EU member states Associated countries Third countries Increasing coordination of national research programmes to improve impact and effectiveness
  • 5. Joint Programming in Research • Close to 85% of public research funds in the EU are spent independently by Member States • Countries working together to identify the core research questions (or the next societal challenge) • Voluntarily, A-la-carte, Variable Geometry • Definition, development and implementation of common strategic research agenda
  • 6. Ten Joint Programming Initiatives 1. Alzheimer and other Neurodegenerative Diseases (JPND) 2. A Healthy Diet for a Healthy Life 3. More Years, Better Lives - Demographic Change 4. Antimicrobial Resistance 5. Agriculture, Food Security and Climate Change 6. JPI Climate 7. Cultural Heritage 8. Urban Areas 9. Water Challenges 10. Healthy and Productive Seas and Oceans
  • 7. JPND brings together • Researchers (Basic, Clinical, Healthcare/Social) • National Funding Bodies • National Research Strategies and Investments
  • 8. Neurodegenerative Diseases? • The neurodegenerative diseases that JPND focuses on are: • Alzheimer’s disease (AD) and other dementias • Parkinson’s disease (PD) and PD-related disorders • Prion disease • Motor neurone diseases (MND) • Huntington’s Disease (HD) • Spinocerebellar ataxia (SCA) • Spinal muscular atrophy (SMA)
  • 9. The JPND goals To tackle the challenge of Alzheimer’s and other neurodegenerative diseases, the goals of the JPND Research Strategy are: • 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
  • 10. Scope of JPND Scientific • Animal models • Biobanks • Cohorts/registries • Disease pathology Social • Health care delivery • Home automation • Health economics • Ethics Medical • Early diagnosis • Prevention • Clinical trials
  • 11. Defragmentation – what JPND is all about… STRATEGIC RESEARCH AGENDA ALIGNMENT OF EU COUNTRIES ON COMMON RESEARCH GOALS
  • 12. JPND Research Strategy (SRA) • Agreed by all JPND Member States + Assoc. Countries • Officially Launched Feb 7th 2012 • 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
  • 13. SRA Enabling Activities • JPND will deliver the SRA within the next ten years through • 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
  • 14. How can JPND reach its goals? • Alignment of research in Member Countries • Involvement of Patients and Public • Partnership with the European Commission • Partnership with Industry • Partnership with other international organisations
  • 15. JPND Actions to date • Common European Strategy • Phase I SRA Implementation (2012-2014) • Annual Transnational Calls for Proposals • Action Groups • National Plans and Strategies • Communication + Dissemination
  • 16. SRA Implementation (2012-2014) Annual Calls for Proposals Centres of Excellence in Neurodegeneration (CoEN) Year Total fund available Research Area No. of Projects 2011 (pilot) €16M Optimization of biomarkers + harmonization of their use 4 2012 €18M Risk and Protective Factors 5 2012 €11M Evaluation of Healthcare 6 2013 €12M Cross-Disease Analysis Closed Feb 2014 2013 €11M Preventive Strategies Closed Feb 2014 2011 €6M Phase I : common resources and methodological approaches 8 2012-13 €8M Phase II : “Pathfinder” projects 5
  • 17. Action Groups • To determine transnational research needs and opportunities • Palliative Care • Animal and Cell Models • Assisted Living Technologies • Longitudinal Cohort Studies • To promote engagement, commitment and partnerships • Engagement and partnership with the EC • Engagement and Partnership with Industry • Public +Patient Involvement in ND Research • Linkage + Alignment of National Plans and Initiatives
  • 19. Health and Social Care Research • Understanding individual care needs (patients + carers) and management of disease, conditions or ill health • Research into the provision and delivery of health and social care services and infrastructure, health economics, health policy, ethics, research governance and studies of research design, measurements and methodologies • Research into social or societal impact of disease
  • 20. Health & Social Care Research • Eight priorities identified in SRA • First priority: • Evaluation of current healthcare and social care pathways relevant to ND • 2012 Joint Transnational Call: • “European research projects for the evaluation of health care policies, strategies and interventions for Neurodegenerative Diseases”
  • 21. Six projects funded – began in 2013 • Acces to Timely Formal Care Frans Verhey, Maastricht University, Netherlands • A Programme for ALS Care in Europe Orla Hardiman, Trinity College Dublin, Ireland • Care for Late Stage Parkinsonism Anette Schrag, University College London, United Kingdom • Adaptive Implementation and Validation of the positively evaluated Meeting Centers Support Programme for people with dementia and their carers in Europe Rose-Marie Dröes, VU University Medical Center Amsterdam, Netherlands • Research to Assess Policies and Strategies for Dementia in the Young Alexander Kurz, Technical University Munich, Germany • Strategies and interventions for vital decisions in Amyotrophic Lateral Sclerosis in • different European countries Dorothée Lulé, University of Ulm, Germany
  • 22. Health & Social Care Research • Barriers to Implementation at pan-EU level • Weak or non-existent national research infrastructure and capacities • Clear differences in the ways health and social care research and services are established in JPND member countries • 2014 Action Plan - Key Elements: • Networking and Coordination • Capacity Building • Patient and Public Involvement • Translational Research and Innovation
  • 23. Report of the Action Group on Longitudinal Cohort Studies ● JPND actions: for ND research on longitudinal cohort studies ● general population-based cohorts ● targeted (preclinical) and disease-focused cohorts ● 169 European studies examined ● Annexes provide detail on:  24 exemplar studies  33 studies on imaging measures  weblinks / references for all 169 cohorts ● Recommendations span: ● co-ordination, funding, policy
  • 24. Recommendations for delivery (Coordination) • Coordination and development of best practice • A series of JPND workshops to address challenges such as: • Preclinical stages of ND (methodologies, tools, measures e.g. imaging) • Cognition, behaviour & function: definitions of functional change, trajectory, outcomes • Data handling: integration of -omics data, sharing big datasets • Cohort alignment: where can data be pooled to provide benefit • Clinical data linkage: how to exploit, harmonise, score, access • Exploiting intervention studies of potential risk factors (vascular, T2D) to address ND risk as an outcome
  • 25. “Mini” European Research Area • JPND can harness international cooperation/partners • Encourage development of national-level SRAs • Platform for European and Global Knowledge and Innovation in ND • Knowledge Hubs – networking and capacity building
  • 26. Declaration from G8 summit on dementia • In response, the OECD is launching a project in 2014 for research on Alzheimer’s and dementia: • Aimed at strengthening international collaboration and promote data sharing at the international level • JPND invited to join the project Advisory Group • OECD plans a G8 mapping based upon JPND mapping methodology
  • 27. Emerging national JPND-related activities • The Netherlands • Research a major theme as part of National Deltaplan for Dementia “…. the Deltaplan will follow closely the JPND strategic research agenda and will strengthen the international position of the Netherlands for both research and industry” Edith Schippers, Minister for Health, Welfare and Sport • United Kingdom • David Cameron’s “Prime Minister’s challenge on dementia” includes specific references to continued support for COEN and JPND research • Ireland • National SRA developed to inform participation in JPND • Researchers used participation in 2011 JPND Biomarkers call to start national network in biomarkers for Alzheimer’s + Parkinson’s
  • 28. Encouraging deeper levels of collaboration for research groups JPND Online Partnering Tool
  • 29. Keep up to date • Visit the JPND website: • http://www.jpnd.eu • Sign up to the JPND News Feeds • E-mail us: secretariat@jpnd.eu • Follow us on Twitter @JPNDEurope
  • 31. • The effect of lifestyle on the prevention of neurodegenerative diseases has been recognized and is considered to be supported by solid evidence, but individual effects are small. Further research into this area, in particular with respect to factors promoting healthy aging is therefore warranted. Nevertheless, research in the improvement of symptomatic treatments must not be neglected for the time being.
  • 32. What are the grand challenges? Energy Neurodegeneration Climate Change Food & Health
  • 33. "If you think research is expensive, try disease!" - Mary Lasker
  • 34. JPND currently partly supported by FP7-JUMPAHEAD (GA. 260774) Management Board • 28 countries represented • Members mandated to act • Chair Philippe Amouyel - France Executive Board • Vice-Chair Adriana Maggi - Italy • Robin Buckle - UK • Mogens Horder - Denmark • Marlies Dorlochter - Germany Scientific Advisory Board • 18 Members, chosen for scientific excellence • Industry and Patient Organisations represented Organisation Steering Committee Executive Board + • Rainer Girgenrath - Germany • Edvard Beem - Netherlands
  • 35. Health Care & Social Care Challenges for implementation at pan-EU level: • Identified opportunities often linked to the structure of, and potential changes to, health and social care systems across Europe. • Marked differences exist between and within JPND countries in the ways that treatment, care and support are financed, commissioned, delivered and regulated. • Large differences exist between countries with respect to cultural factors and influences, as well as the most relevant stakeholders to be engaged to implement outcomes from health and social care research. • Many relevant national-level stakeholders not regularly engaged with research community (regulators, healthcare providers). • National legislative compliance • Agencies responsible for funding related to ND health and social care research are not all involved in JPND • The ability of pan-European efforts to raise capacities in JPND countries, in particular those with little or no existing research in this area, is not altogether clear.
  • 36. Top three priorities: 1. Cost-effectiveness/economic evaluations 2. Identification of subgroups likely to respond to treatment 3. Initiation and promotion of collaborative research efforts
  • 37. What is being done? • Cause: interplay between biological, environmental, social factors • Huge pharmaceutical effort towards prevention and cure remains elusive • Pharmacological treatment risk of side effects • Psychosocial interventions increasing • Since the launch of the SRA, several trials applying different anti-aggregation approaches have been initiated. Among them, studies involving genetic cases in pre- symptomatic disease stages are seen as particularly promising. Their outcome is awaited and will have a major impact on future developments.
  • 38. Trends of reduced dementia occurrence Jan 28, 2014 Bengt Winblad, Karolinska Instituet, Sweden 43 • At least five studies provide evidence suggesting that incidence of dementia may have decreased over the last 20 years (still, prevalence is increasing): • Rocca et al. Trends in the incidence and prevalence of Alzheimer’s disease, dementia, and cognitive impairment in the United States. Alzheimer’s & Dementia 2011 • Schrijvers et al. Is dementia incidence declining? Trends in dementia incidence since 1990 in the Rotterdam study. Neurology 2012 • Qiu et al. Twenty-year changes in dementia occurrence suggest decreasing incidence in central Stockholm, Sweden. Neurology 2013 • Christensen et al. Physical and cognitive functione of people older than 90 years: a comparison of two Danish cohorts born 10 years apart. The Lancet 2013 • Matthews et al. A two-decade comparison of prevalence of dementia in individuals aged 65 years and older from three geographical areas of England: results of the Cognitive Function and Ageing Study I and II. The Lancet 2013 • Why? - Better awareness / treatment of lifestyle-related risk factors • Successful Prevention!
  • 39. 44 Healthy brain Alzheimer brain ? Risk factors in AD; possible prevention What can we do ourselves to at least delay Alzheimer’s Disease onset? Active lifestyle - Physical, Social, Mental Control of co-morbidity - Diabetes, Hypertension, Hypercholesterolemia Nutrition - ”Healthy” food intake Some tested ”drugs” in prevention trials: - Anti-inflammatory (eg NSAIDs) - Gingko Biloba - Vitamin B, C, D and E - Estrogens - ”Medical food” - Souvenaid, Axona, Nestlé, Smartfish, Jan 28, 2014 Bengt Winblad, Karolinska Instituet, Sweden
  • 40. Epidemiology/Risk factor research; Intervention – the way forward to 2025 Jan 28, 2014 Bengt Winblad, Karolinska Instituet, Sweden
  • 41. There is no treatment for Alzheimer’s disease and the risk factors are still unknown
  • 42. • In Europe, 1 out of 5 people may develop Alzheimer’s disease • It is estimated that 35.6 million people worldwide are suffering from dementia in all its forms in 2011 • This number is estimated to nearly double every 20 years, possibly reaching 65.7 million in 2030 • Europe accounts for over 28 % of the total number of persons suffering from dementia, placing it second only to Asia (with 35 %), while of all the world's regions western Europe has the highest proportion of sufferers (19 %)
  • 43. JPND-supported projects • Biomarker Harmonization • BIOMARKAPD: Standardizing biomarker measurements across Europe for Alzheimer’s and Parkinson’s Disease • Risk Factors • COURAGE-PD: Risk factor assessment for genetics and environment in Parkinson‘s Disease • STRENGTH: Survival, Trigger and Risk, Epigenetic, Environmental and Genetic targets for Motor Neuron health • Healthcare Evaluation • ALS-CaRE: A programme for ALS care in Europe • RHAPSODY: Research to access policies and strategies for dementia in the young
  • 44. What are the conditions that create a ripe environment for innovation? Conscious of its progress, proud of its past, sure of its future, day science advances in light and glory Joint Transnational Calls Night science wanders blind. It hesitates, stumbles, recoils, sweats, wakes with a start. […] There is no way to predict whether night science will ever become day science; whether the prisoner will emerge from the darkness. Centres of Excellence in Neurodegeneration Of flies, mice and man Francois Jacob
  • 45. Partnership with the EC • Establish a programme of co-investment • Work towards a sustained increase of investments from JPND partners • Leverage the value of investments and resources at both national and EC level, to the benefit of Europe Examples: • Synergy between JPND actions and Horizon 2020 programme • Linking national plans through actions to engage national infrastructures • Development and long term sustainability of European cohorts • Unlocking national capability on fellowship programs

Editor's Notes

  1. The challenge of diagnosing, treating and caring for people affected by these diseases is daunting and no European country alone has the expertise, or resources, necessary to tackle all of the big questions in this area.
  2. The challenge of addressing neurodegenerative diseases such as Alzheimer’s and Parkinson’s is a truly global one. Most neurodegenerative diseases (ND) are incurable and are strongly linked with age. Dementias alone affect more than 7 million people in Europe and their care is estimated to cost €130 billion a year. This heavy burden on the individuals with disease, their relatives, and society as a whole is a problem that will only get worse as the European population inexorably ages, and the number of people working in care continues to decrease. Close to 85% of public research funds in the EU are spent independently by Member States
  3. The idea is not to spend more money, but to use the money invested in research fields common in all European countries in a more efficient manner, coordinating national programmes around common objectives and a common timeline JPIs = strong involvement of national research programmes + strategies
  4. Suite of ten JPIs identified and approved by EU Council Alignment of national research programmes around a common focus or societal challenge “True” Joint Programming Member States working together in a systematic and strategic way to identify the core research questions (or the next societal challenge) Then implementing the full policy cycle (developing roadmaps, funding research, undertaking ex-post and ex-ante evaluations)
  5. To address these diseases in their entirety
  6. Neurodegenerative disease is an umbrella term for a range of conditions which primarily affect the neurons in the human brain. Incurable, debilitating conditions that result in progressive degeneration and / or death of neurons Problems with movement (ataxias), or mental functioning (dementias)
  7. JPND will…… Enhance research capacity Reduce duplication of research Increase research coordination Improve outcomes and care
  8. Launching activities (ie Calls, task forces and activities) Leveraging of engagement and resources Linking and synchronising national plans
  9. Over €100 million will be made available
  10. Encompasses a wide range of areas incl. Disease aetiology, prevention, epidemiology, need, disability, independence and autonomy, social participation, healthcare services, social care, housing, informal (unpaid) care, financing and economics more generally, policy and decision-making.
  11. Studies need to be designed that link social and psychological interventions with biomarkers. Patient involvement in the design studies and in the determination of outcome-measures is strongly encouraged A JPND Action Plan in this area will be designed to prioritise a programme of actions that are essential to support collaborative health and social care innovation and research focused on the needs of patients and the public.
  12. The OECD is establishing an Expert Group to provide advice and guidance to this project. The JPND is invited to join this advisory Group and provide additional information on its terms of reference. OECD plans a G8 mapping based upon JPND mapping methodology. The project will involve a stocktaking exercise on the most important issues regarding international access and sharing of data resources for Alzheimer’s and dementia.
  13. Recent national plans include references to JPND Dutch Deltaplan for Dementia, UK Prime Minister’s Challenge on Dementia
  14. Improving networking between disciplines and researchers. JPND can act as a medium to encourage deeper levels of collaboration between research communities from diverse backgrounds (e.g. biomedical researchers, healthcare researchers, patient organisations, industry).
  15. Successful projects span areas such as;