The pilot Joint Programming Initiative on Neurodegenerative Diseases, notably Alzheimers State of Pl

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The pilot Joint Programming Initiative on
Neurodegenerative Diseases, notably
AlzheimersState of Play
Towards Joint Programming in Research
Prof. Philippe Amouyel
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Prevalence of Neurodegenerative Diseases
From Rocca W et al, Eurodem
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The European Mobilization

• Informal meeting on competitiveness for Ministers
  of Research
• Versailles, 17th July 2008
• Workshop 4 the challenge of the health of an
  ageing population the fight against
  neurodegenerative diseases
• Chaired by the French Minister of Higher
  Education and Research, Mrs Valérie Pécresse
• Two contributors
• Pr. André Syrota, Inserm, France
• Sir Leszek Borysiewicz, MRC, UK

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Joint programming perspectives and motivations

• A synergistic use of shrinking research budgets
  in a difficult economic climate
• Grouping calls for grants at the level of several
  member states will reinforce the potential for
  scientific collaborations in Europe
• Accountable to the stakeholders in pooling MS
  research efforts on common European societal
  challenges
• Simplifying European way of scientific
  collaboration (and administration)
• Following the FPEU, France hosted meetings
  dedicated to this issue until a management
  structure is agreed upon

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Working Group

• A working group under the auspices of the French
  Presidency
• Invitation by the French Ministry of Research
• Involving funding agencies, research agencies,
  scientific from of Member and Associated States
• Meetings 22nd, Sept. 08 13th Nov. 08
• Interest and emergency recognized for joint
  action with a consensus focus on Alzheimers
  disease
• Focusing on the actions for which the European
  dimension has added value compared to
• respective national actions

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A Declaration of Intent

• Proposing
• A basis for a shared vision
• The outline of a Strategic research agenda and
  preliminary topics that could be implemented
  quickly
• Basis for a management structure
• Declaration of intent
• 10 countries France, UK, Ireland, Italy,
  Sweden, Denmark, Spain, The Netherlands, Czech
  Republic, Switzerland ( Finland)
• Proposed on 2nd December, 2008

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Terms of Reference for the Management structure

• Meeting 12th March 2009
• 14 states (including two associated members)
  France, UK, Germany, Italy, Spain, Ireland,
  Denmark, Norway, Czech Republic, Sweden, the
  Netherlands, Switzerland, Finland, Portugal.
• Agreed upon the creation of the management
  structure
• Preparation of a Term of Reference of the
  management structure
• Provisional agenda
• 27th April dead-line for nominations
• 6th May kick-off meeting

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1. A shared vision
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A scattered public research in the European
Research Area.
Investing less than the US
Dementia-Alzheimer
Low coordination / High fragmentation
From Towards joint programming in research
Working together to tackle common challenges more
effectively, EU COM (2008) 468
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2. Towards a common strategic research agenda
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Take 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
• A medical challenge
• An ethical and social challenge

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Challenges

• Research on genetic susceptibility and GWAS
• Developing competitive animal models
• Basic research on pathophysiology
• Development of new imaging technologies and new
  biomarkers
• Studying early onset forms of Alzheimers
  disease and related dementia
• Development of new treatment strategies
• Coordinate biobanks for blood samples, CSF and
  brain tissues
• Launching or integrating large population cohorts
  or registries

Scientific

• Early diagnosis using multidisciplinary approach
• The use of prevention to reduce the burden of
  dementias
• Publicly-funded clinical trials
• Standardization of diagnostic criteria and
  diagnostic instruments

Medical

• Comparison of different systems and
  identification of best practice
• Home automation, smart homes and domotics
• Ethics and health economics

Social
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3. Designing a management structure
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Goal

• Complete the shared vision and agree on the
  strategic Research Agenda
• Activate the most suited combination of public
  research instruments, regional, national and
  European
• Monitor and evaluate the completion of the
  objectives
• Report at the political level to member states
  and the EU

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Composition

• Representative able to take strategic decisions
  with sufficient delegation to engage funds at a
  national level
• A member of a research ministry, the director or
  senior executive of a research agency or a
  national council (e.g. Inserm for France, MRC for
  UK.) or any other representative
• Research scientists, clinicians and health
  service researchers should be associated
• On a voluntary basis
• Open to new participants during the duration of
  the action

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The Management Structure Organisation

• Management structure
• Management board
• Scientific advisory board
• Executive board/secretariat
• The management board will be the decision making
  body.
• The management board will consult the scientific
  committee on the detailed preparation of the
  strategic research agenda.
• The executive office/secretariat will translate
  the decisions of the management board into
  actions.

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Management Structure Missions

• Develop a shared vision of the nature of the
  challenge, the opportunities and threats
  associated with it, the added value of joint work
  and the impact which a joint initiative could
  have over time.
• Lay down a strategic research agenda (SRA),
  identifying the most suitable and urgent
  priorities for joint action, taking into account
  already existing national and EU activities
• Look for the best suited instruments and funding
  mechanisms (national, regional,
  inter-governmental, Community) adapted to the
  selected priorities
• Make recommendations about the implementation of
  the final SRA with variable participatory
  arrangements according to the different work
  packages in a time perspective
• Build up an à la carte program in which several
  countries in variable geometry could participate
  voluntarily and on the basis of their political
  and financial commitment.

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Management Structure Framework Conditions

• Identify and share information on relevant
  national programmes and research activities
• Reinforce joint foresight and technology
  assessment capacities and keeping an oversight of
  the research strategy
• Share (scientific / clinical) information
  resources
• Exchange best practices and agree common
  standards
• Define common rules for cross border
  participation in national programmes
• Select topics for joint calls based on the advice
  from the scientific council and other bottom-up
  procedures of scientific consultations
• Manage a harmonised peer review process
• Define an agreed intellectual property regime
• Monitor and evaluate progress and achievements
  against pre-set objectives
• Report at the political level to participating
  states, and at the EU
• level (GPC, CREST)

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JP in Neurodegeneration and AD State of Play

• A declaration of intent and commitment of
  participating MS
• A focused theme that addresses a major European
  Health challenge
• A list of clear and realistic scientific, medical
  and social objectives to be achieved
• A willingness to coordinate similar programmes
  toward transnational European added value while
  not undermining existing opportunities and
  avoiding unnecessary duplications among national
  programmes
• An involvement of scientists and physicians for
  bottom-up European projects from the beginning to
  the end
• A new initiative around research excellence
  intended to offer a competitive and attractive
  image of European research to the highest benefit
  of European population and economy