evoluzione dell’iniziativa di programmazione congiunta per ... · evoluzione dell’iniziativa di...
TRANSCRIPT
![Page 1: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/1.jpg)
Evoluzione dell’iniziativa di
programmazione congiunta per
le malattie neurodegenerative
Adriana Maggi
Vice-chair JPND
![Page 2: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/2.jpg)
……since 2008
JPND a pilot initiative for Joint
Programming in Europe
![Page 3: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/3.jpg)
A major societal challenge for the coming years
![Page 4: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/4.jpg)
Joint programming on
neurodegeneration – why?
30% of healthy elderly subjects already have
Alzheimer pathology
Cognitively normal subject aged 72 years
with Alzheimer pathology (red)
![Page 5: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/5.jpg)
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
![Page 6: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/6.jpg)
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
![Page 7: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/7.jpg)
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)
![Page 8: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/8.jpg)
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
![Page 9: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/9.jpg)
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%
![Page 10: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/10.jpg)
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
![Page 11: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/11.jpg)
March 2012 Launch of the JPND
Research Strategic Agenda
![Page 12: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/12.jpg)
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
![Page 13: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/13.jpg)
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
![Page 14: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/14.jpg)
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
![Page 15: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/15.jpg)
• 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
![Page 16: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/16.jpg)
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
![Page 17: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/17.jpg)
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
![Page 18: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/18.jpg)
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
![Page 19: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/19.jpg)
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
![Page 20: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/20.jpg)
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
![Page 21: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/21.jpg)
SRA Implementation
1) Create List of priorities from SRA proposals
2) Organise thematic working groups
3) Create List of opportunities
4) Support Implementation
![Page 22: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/22.jpg)
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
![Page 23: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/23.jpg)
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
![Page 24: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/24.jpg)
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
![Page 25: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/25.jpg)
...e l’ITALIA?
![Page 26: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/26.jpg)
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
![Page 27: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/27.jpg)
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
![Page 28: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/28.jpg)
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
![Page 29: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/29.jpg)
I FINANZIAMENTI
MINISTERO DELLA SALUTE
MIUR
LE INDUSTRIE INTERESSATE
![Page 30: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/30.jpg)
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
![Page 31: Evoluzione dell’iniziativa di programmazione congiunta per ... · Evoluzione dell’iniziativa di programmazione congiunta per le malattie neurodegenerative Adriana Maggi Vice-chair](https://reader031.vdocuments.net/reader031/viewer/2022020416/5c6a1c1509d3f2b2078c281b/html5/thumbnails/31.jpg)
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]