Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di...
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Evoluzione dell’iniziativa di
programmazione congiunta per
le malattie neurodegenerative
Adriana Maggi
Vice-chair JPND
……since 2008
JPND a pilot initiative for Joint
Programming in Europe
A major societal challenge for the coming years
Joint programming on
neurodegeneration – why?
30% of healthy elderly subjects already have
Alzheimer pathology
Cognitively normal subject aged 72 years
with Alzheimer pathology (red)
To mobilise the best researchers from all fields, to develop the sharing of best
practices and know how
Taking the disease
into account in all its dimensions
• A scientific challenge • Genomics
• Experimental models
• Cell biology
• …
• A medical challenge • Clinical research
• Translational research
• Therapeutics research
• …..
• An ethical and social challenge
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
2011- 12 – 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)
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 €0.27 billion - 59 agencies from 18 countries
+ EC inc. ERC covering 1756 projects
Major Programmes 368 €1.3 billion - 39 funding agencies
(12 countries + EC inc. ERC)
Centres of Excellence 111 14 countries
Research Networks 32 7 countries + Europe-wide
Population Cohorts 72 15 countries
Case Control Studies 22 9 countries
Disease Registries 21 9 countries + Europe-wide
DNA, Tissue & Cell line Banks 81 15 countries
Animal Models 37 10 countries
Bio/Neuro Infrastructures 21 9 countries + Europe-wide
ND research spend by disease
area (annualised)
HD
3.3%
SCA
0.3%
SMA
0.9%
ND in general 30.4%
AD and other dementias 45.3%
MND
3.7% Prion
4.5%
PD
11.5%
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 2nd 2011
2. 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
March 2012 Launch of the JPND
Research Strategic Agenda
Available on JPND Website
• http://www.neurodegenerationresearch.eu
• http://www.jpnd.eu
• Full Research Strategy
• Executive Summary in 13 Languages
• Reports summarising responses received from consultations
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
Scientific Priorities: Origins of neurodegenerative
disease
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
• 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
Scientific Priorities: Disease definitions and diagnosis
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
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 health-
related 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
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
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
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
SRA Implementation
1) Create List of priorities from SRA proposals
2) Organise thematic working groups
3) Create List of opportunities
4) Support Implementation
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
SRA implementation 2012 –
Topics proposed MB Meeting London May 2012
• Genetic, epigenetic & environmental risk factors
• Animal models for the identification of mechanisms underlying
ND
• Cross-disease pathway analysis
• Preventive strategies
• Evaluating healthcare policy strategies and interventions
• Systematic review of «pathways to care»
• Palliative and end-of life care
Task force
Task force
Future call
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 2012 € 20 M
Austria - Italy - Netherlands - Poland -
Portugal- Sweden - Slovenia
...e l’ITALIA?
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
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
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
Risultati partecipazione
italiana alle prime 2 call
I FINANZIAMENTI
MINISTERO DELLA SALUTE
MIUR
LE INDUSTRIE INTERESSATE
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
Keep up to date
• Visit the JPND website:
• http://www.neurodegenerationresearch.eu
• http://www.jpnd.eu
• Search our Mapping Database
• Sign up to the JPND News Feed
• Follow us on Twitter: @JPNDEurope
• E-mail us: [email protected]