Evoluzione dell iniziativa di programmazione congiunta per le malattie neurodegenerative. Adriana Maggi Vice-chair JPND

Transcription

1 Evoluzione dell iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair JPND

2 since 2008 JPND a pilot initiative for Joint Programming in Europe

3 A major societal challenge for the coming years

4 Joint programming on neurodegeneration why? 30% of healthy elderly subjects already have Alzheimer pathology Cognitively normal subject aged 72 years with Alzheimer pathology (red)

5 Taking the disease into account in all its dimensions To mobilise the best researchers from all fields, to develop the sharing of best practices and know how A scientific challenge Genomics Experimental models Cell biology A medical challenge Clinical research Translational research Therapeutics research.. An ethical and social challenge

6 Organisation Management Board 25 countries represented Mandated to act Chair Prof Philippe Amouyel (France) Executive Board Vice-Chair Prof Adriana Maggi (Italy) Enda Connolly (Ireland) Edvard Beem (The Netherlands) Mogens Horder (Denmark) Scientific Advisory Board 15 Members (5 in each domain) Chosen for scientific excellence

7 Activities The delivery of the SRA 1. Mapping exercise of National and European programmes 2. Strategic prioritisation three thematic workshops (basic/clinical/healthcare) Stakeholder discussions fourth workshop to integrate outputs, incorporate stakeholder perspectives 3. Consultation exercise (website publication) 4. Delivery of the SRA, taking into account Outputs from scientific workshops Consultation Discussion at MB (to incorporate funder, political & policy considerations)

8 JPND mapping 1.62bn investment 374 programmes, 1766 smaller projects 254 bioresources captured Survey Section Entries Which represents: Organisational Details 69 Organisations from 20 countries Smaller Investments 1756 Major Programmes billion - 59 agencies from 18 countries + EC inc. ERC covering 1756 projects 1.3 billion - 39 funding agencies (12 countries + EC inc. ERC) Centres of Excellence countries Research Networks 32 7 countries + Europe-wide Population Cohorts countries Case Control Studies 22 9 countries Disease Registries 21 9 countries + Europe-wide DNA, Tissue & Cell line Banks countries Animal Models countries Bio/Neuro Infrastructures 21 9 countries + Europe-wide

9 ND research spend by disease area (annualised) ND in general 30.4% AD and other dementias 45.3% SMA 0.9% SCA 0.3% HD 3.3% PD Prion 4.5% MND 3.7% 11.5%

10 Implementation- test case 1. Launched by JPND - Centres of Excellence Network in Neurodegeneration Research (COEN) on Feb 2011 Participating Countries: Germany, UK, Ireland, Canada, Belgium, Italy Topic : Biomarkers, Imaging, Animal models Commitment: for 4 M 8 Projects retained on Sept 2 nd Launched by JPND on May 2011 Participating Countries: 21 Topic: Neurodegenerative Diseases - a call for European research projects for the optimisation of biomarkers and harmonisation of their use between clinical centres Commitment for 16 M 4 projects retained on 7th Dec 2011

11 March 2012 Launch of the JPND Research Strategic Agenda

12 Available on JPND Website Full Research Strategy Executive Summary in 13 Languages Reports summarising responses received from consultations

13 Scientific Priorities: Origins of neurodegenerative disease Further knowledge is needed regarding: Causes of specific ND Factors that determine people s risk and resilience Triggering events leading to illness Ageing process Characterise at-risk populations; genetic, epigenetic and environmental risk factors Identify environmental and behavioural modulators

14 Scientific Priorities: Disease mechanisms and models Increase understanding of underlying disease mechanisms to: Underpin the development of new diagnostic and therapeutic approaches Identify appropriate time-windows for intervention Establish novel cell-based and animal models Elucidate the biological and environmental basis of behavioural and psychological symptoms in ND

15 Scientific Priorities: Disease definitions and diagnosis Refine and update current diagnostic criteria Better define the various forms and subtypes of ND, including the stages before clinical symptoms emerge Provide new/improved diagnostic tools for earlier detection Establish new biomarkers to: Provide links between human and animal-based studies Provide measures of disease progression, prognosis and treatment effects Standardise and harmonise tools and assessments to ensure comparability of results and support cross-centre studies

16 Scientific Priorities: Treatments and prevention Promoting connectivity between studies in animal/cell models and patients Improve selection (or stratification) of subjects entering clinical trials Further develop psychosocial interventions, paying attention to the promotion of social inclusion and carer involvement Establish cohorts of patients with preclinical ND to provide a platform for the future testing of interventions to prevent or slow disease Pursue longer-term approaches that promote regenerative strategies and develop novel systems for the delivery and targeting of therapeutics to specific sites in the brain and nervous system

17 Scientific Priorities: Healthcare and social care Evaluate equity of access to, and cost-effectiveness of, pathways to diagnosis, treatment, care & support Identify factors impacting on disability and healthrelated QoL in ND, including comorbidity, nutrition, and interaction with family, carers, environment, and health/social care systems Relate short-term studies to real-world settings Improve outcome measures to better reflect patient & carer perspectives Addressing specific burden of ND in strategies for assisted living Research in palliative and end-of-life care

18 Enabling Activities Knowing our research capability European and National ND research activity mapped Supportive infrastructure and platforms integration and harmonisation of data and materials standardisation of guidelines, methods and tools for data collection and analysis review policy frameworks to facilitate research across the full range of healthcare structures Working in partnership with industry Promote connection between and across academic and commercial domains Encourage data and resource exchange

19 Enabling Activities Working with regulatory organisations Effective translation of research through to patient benefit Ensure that regulation is easily understood + proportionate to risk Promote regulatory support networks International partnership beyond Europe Unmet clinical need and societal impact of ND is a global issue Cooperation should be strategic and offer clear added value Capacity building Networks across and between different disciplines Methodological hubs

20 Enabling Activities Education and Training advice given to patients should be based upon; a good understanding of the disorder the patient needs characteristic of these conditions the available evidence-based options for treatment tailored clinical and research education and training programmes public health messaging Connection to policy makers a framework to highlight issues for national policy consideration, and promote compatibility between countries address translational gaps in policy Communication and outreach promote translation into policy and practice ensure stakeholder communities are informed

21 SRA Implementation 1) Create List of priorities from SRA proposals 2) Organise thematic working groups 3) Create List of opportunities 4) Support Implementation

22 Next Challenges Implementation of the SRA Developing national SRA Funding commitment based on a 5 year period Leverage effect Based on existing mechanisms Scale-up funding commitment

23 SRA implementation 2012 Topics proposed MB Meeting London May 2012 Genetic, epigenetic & environmental risk factors Animal models for the identification of mechanisms underlying ND Task force Cross-disease pathway analysis Future call Preventive strategies Task force Evaluating healthcare policy strategies and interventions Systematic review of «pathways to care» Palliative and end-of life care

24 Funding forecast Ireland 2.5 M Turkey 1 M Germany 3 M Norway 1.8 M UK 1 M France 5 M Finland 1 M Belgium 1,5 M Spain 0,5-1 M Croatia 1 M Luxenbourg 0,5 M Denmark 0,5-1 M Total at June M Austria - Italy - Netherlands - Poland - Portugal- Sweden - Slovenia

25 ...e l ITALIA?

26 ITALIA IN SENO AL JPND Acquisizione della vicepresidenza Partecipazione SAB (Stefano Cappa) Partecipazione attiva ai workshop per la definizione della agenda strategica Organizzazione workshop JPND-industrie Attiva partecipazione alle task-forces per implementazione agenda strategica

27 ESERCIZIO DI MAPPATURA Mapping of Italian research excellence in Neurodegenerative Diseases Riunione APRE Roma 2 marzo 2011 creazione di una lista di laboratori attivi nel settore delle malattie neurodegenerative e dei progetti attualmente finanziati sensibilizzazione delle principali società scientifiche: SIN SINDEM - SIF- SINS definizione di una lista di priorità per la ricerca italiana Ricerca Nel Settore Delle Malattie Neurodegenerative In Italia Verso La Roadmap Italiana - Incontro con le Industrie interessate MIUR Roma 13 dicembre 2011

28 Risultati partecipazione italiana alle prime 2 call Risultato della prima call: hanno partecipato 6 gruppi italiani come capo-fila o come membri: 2 soli gruppi di italiani sono rientrati nel novero dei vincitori a.) Mondino di Pavia: membro del gruppo di ricerca che ha presentato il progetto di ricerca che ha avuto il massimo dei risultati b.) Fatebenefratelli di Brescia Risultato della seconda call: hanno partecipato 8 gruppi italiani di cui 6 hanno ottenuto il finanziamento

29 I FINANZIAMENTI MINISTERO DELLA SALUTE MIUR LE INDUSTRIE INTERESSATE

30 I Paesi Europei affrontano Il problema delle mallatie neurodegenerative La FRANCIA : Fondazione per l Alzheimer La GERMANIA: nuovo istituto di ricerca sul SN a Bonn La SPAGNA: Istituto di ricerca e cura Regina Sophia La GRAN BRETAGNA: interventi alla Camera dei Lord e nuovi finanziamenti L OLANDA: un nuovo programma di ricerca dedicato

31 Keep up to date Visit the JPND website: Search our Mapping Database Sign up to the JPND News Feed Follow us on us: