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 20122 – 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

AlbaniaAustriaBelgiumCanadaCroatia

Czech RepublicDenmarkFinlandFrance

GermanyGreece

HungaryIrelandIsraelItaly

LuxembourgNetherlands

NorwayPoland

PortugalRomaniaSlovakiaSlovenia

SpainSweden

SwitzerlandTurkey

United Kingdom

JPND is the largest global ND research initiative led by EU countries, with 28 participatingEU member statesAssociated 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 COUNTRIESON 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 €6MPhase 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 CareFrans Verhey, Maastricht University, Netherlands

• A Programme for ALS Care in EuropeOrla Hardiman, Trinity College Dublin, Ireland

• Care for Late Stage ParkinsonismAnette 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 EuropeRose-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 CommitteeExecutive 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:

•Cost-effectiveness/economic evaluations

•Identification of subgroups likely to respond to treatment

•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