JPND and HD4HL

Enda ConnollyJPND Management Board Member

20/02/2014

Joint Programming - a definition

European countries engaging

•voluntarily and on a variable geometry basis to tackle a major societal question

•in the definition, development and implementation of a common strategic research agenda

•based on a common vision on how to address major societal challenges.

We cannot tackle neurodegenerative diseases by acting as single countries

AlbaniaAustriaBelgiumCanadaCroatia

Czech RepublicDenmarkFinlandFrance

GermanyGreece

HungaryIrelandIsraelItaly

LuxembourgNetherlands

NorwayPoland

PortugalRomaniaSlovakiaSlovenia

SpainSweden

SwitzerlandTurkeyUnited

Kingdom

JPND is a global 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

JPND brings together….

• Researchers (Basic, Clinical, Healthcare/Social)

• National Funding Bodies

• National Research Strategies and Investments

Current JPND strategy

To increase coordinated investment in ND research

aimed at finding causes of disease, developing cures,

and identifying appropriate ways to care for those

with neurodegenerative diseases

• Immediate JPND goals:

• To add value to national investments through coordinated action

• To encourage the development of national research strategies in ND

• To engage in partnership to reach the full potential of JPND

JPND currently partly supported by FP7-JUMPAHEAD (GA. 260774)

Management Board • 27 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 and competence

Organisation

Steering CommitteeExecutive Board + •Enda Connolly - Ireland •Rainer Girgenrath - Germany•Edvard Beem - Netherlands

DEFRAGMENTATION- WHAT JPND IS ALL ABOUT

STRATEGIC RESEARCH AGENDA

ALIGNMENT OF EU COUNTRIESON COMMON RESEARCH GOALS

Scientific• Animal models• Biobanks• Cohorts/registries• Disease pathology

Social• Health care delivery• Home automation• Health economics• Ethics

Medical• Early diagnosis• Prevention• Clinical trialsFocus on

Three Domains

Scope of the initiative

JPND Research Strategy (SRA)

• Agreed by 25 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

JPND Research Strategy (SRA)•SRA Enabling Activities:

• JPND will deliver the SRA within the next ten years through a combination of:

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

•Partnership with the European Commission

•Partnership with Industry

•Partnership with other international organisations

•Involvement of Patients and Public

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 18th, 2014

2013 €11M Preventive Strategies Closed Feb 20th, 2014

2011 €6MPhase I : common resources and

methodological approaches8

2012-13 €8M Phase II : “Pathfinder” projects 5

Call statistics

Year Call area of interestNo. of

proposals submitted

Budget requested (million €)

No. of proposals

recommended for funding

No. of proposals supported

Budget supported (million €)

Success rate (%)

2011Harmonization of

Biomarkers14 €31 5 4 €14 29%

2012Risk and Protective

Factors52 €97 18 5 €17 10%

2012 Healthcare Evaluation 22 €29 9 6 €9 27%

Total   88 €157m 32 15 €40m 17%

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

JPND-supported projects

Fact Sheets Publications

SRA Implementation (2012-2014)

Action Groups

• To determine transnational research needs and opportunities

• Palliative Care (chair: E. Connolly)

• Animal and Cell Models (chair: A. Maggi)

• Assisted Living Technologies (chair J. Hoogendam)

• Longitudinal Cohort Studies (chair: R. Buckle)

• To promote engagement, commitment and partnerships

• Engagement and partnership with the EC (chair: P.

Amouyel)

• Engagement and Partnership with Industry (chair: A. Maggi)

• User and Public Involvement in ND Research (chair: M. Horder)

• Linkage + Alignment of National Plans and Initiatives (chair: E. Hirsch)

Action Group Recommendations

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 H2020 programme•Linking national plans through actions engaging national infrastructures•Development and long term sustainability of European cohorts•Unlocking national capability on fellowship programs

Partnership with the EC

• First call of Horizon 2020 (Dec. 2013)• ERA-NET:

• “Establishing synergies between the Joint Programming on Neurodegenerative Diseases Research and Horizon 2020”.

• Proposal should:

• coordinate national and regional programmes for research in the area of ND diseases research by implementing a transnational call with EU co-funding

• Potential call topics:

• Identification of genetic, epigenetic and environmental risk + protective factors

• Longitudinal cohorts in ND research

• Advanced experimental models of ND

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

Collaboration with JPI HDHL

• Shared goals and activities

• Possible collaboration

Trends of reduced dementia occurrence

Jan 28, 2014 Bengt Winblad, Karolinska Instituet, Sweden 23

• 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!

24

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

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

Potential Next Steps

• Arrange a small scientific working group • SAB-based?

• Determine potential areas of collaboration

• Identify possible actions

• Report back to JPND and HD4HL

Keep up to date

• Visit the JPND website:• http://www.neurodegenerationresearch.eu• http://www.jpnd.eu

• Sign up to the JPND News Feeds

• Follow JPND Progress pages

• E-mail us: secretariat@jpnd.eu

• Follow us on Twitter:

@JPNDEurope