Governance and advisory bodies

In order to build a shared vision of the projects while taking into account the needs, interests and constraints of all of the Network members, FILFOIE has set up several governance and advisory bodies. Each of them comprises representatives from various structures and backgrounds and thus benefits from the complementary strengths of the Network members.

Coordinating Team

The Coordinating Team (CT) leads the coordination work of the Network, implements the strategic orientations defined by the governance and advisory bodies, draws up and manages the selected projects. The CT is based in the hepatology department of the Saint-Antoine Hospital in Paris.

Composition of the Coordinating Team  

• • • • Leader: Pr Olivier Chazouillères
        
      • Head of project: Aurélie Nègre
        Mail : aurelie.negre@aphp.fr
        
      • Head of mission “research coordination”: Paola Squarzoni
        Mail : paola.squarzoni@aphp.fr
      • Head of mission “improvement of patient care”:  Émilie Le Beux
        Mail : emilie.lebeux@aphp.fr
      • Head of mission “Information – Training”: Gab Harrivelle
        Mail : gab.harrivelle@aphp.fr
        

Executive Committee (CoDir)

The Executive Committee’s missions are the following:

• Define a framework for the leadership of the Network based on objectives defined by the French Ministry of Health and Solidarity (DGOS),
• Track the progress of missions concerning patient care, research, European and International links, education and communication,
• Set up any committee necessary in order to reach the Network’s objectives,
• Approve the propositions made by the Steering Committee (CoPil),
• Approve the propositions made by the Scientific Committee (CoSci) and decide on priorities,
• Approve the annual progress report,
• Approve the annual budget and staff delegation within the Network,
• Be the key correspondent for the different members of the Network.

Composition of the Executive Committee

• Network leader
• Network head of project
• 2 representatives maximum from each of the coordinating centre of reference (CRMR)
• 6 representatives from the constitutive centres of reference (CRMR)
• 3 representatives from the centres of competence (CCMR) within the AP-HP
• 8 representatives from the centres of competence (CCMR) outside AP-HP
• 2 representatives maximum per duly authorised patient organisation
• 1 representative from the learned societies
• 1 representative from the research laboratories

Steering Committee (CoPil)

The Steering Committee’s missions are the following:

• Propose a general policy and strategy for the four main lines of the Network (Diagnosis & Patient care, Research, Europe & International, Training & Information, in compliance with applicable National Rare Diseases Plan (PNMR) directives),
• Propose the annual budget,
• Propose setting up working groups according to needs,
• Draw up the Network’s work schedule and its follow-up (Quality Assurance),
• Prioritise and adapt the schedule, as appropriate.

Composition of the Steering Committee

• • Network leader
  • Network head of project
  • 3 representatives from the coordinating centres of reference (CRMR) (one per health network)
  • 2 representatives from the centres of competence CCMR outside APHP (one representative for adults and one representative for children), on a voluntary basis
  • 1 representative per patient organization. In the event of it being impossible to be present, a patient organization may be represented by a member of its choice belonging to the CoPil (CRMR, CCMR, other patient organization)
  • Non permanent members (guests) according to subjects:
    • Coordinating Team’s heads of mission,
    • industries (limited to one per network and per CoPil),
    • research laboratories,
    • genetics laboratories,
      liberal gastroenterologists (CREGG),
    • any other person whose presence is considered necessary.

Scientific Committee (CoSci)

The Scientific Committee provides recommendations concerning the research projects it is submitted, in order to promote this activity in the member centres. Its role is to:

• make it easier to implement multicentric and federating prospective studies within the Network, supplying, if needed, assistance in methodology and statistics,
• give an opinion on projects it is submitted: coherency with the FILFOIE perimeter, feasibility, type of support required (methodology, logistics or funding, in keeping with the load/capacities of the FILFOIE CRA/CST),
• give an opinion on candidates to back in response to calls for tender concerning network projects,
• monitor research activity of the centres belonging to the Network.

Each Network member and partner can propose projects to the Scientific Committee. The projects are to be sent to the Coordinating Team via the Network head of mission “Research Coordination”. If necessary, the Scientific Committee may ask the project bearers to come to a meeting and give further details about their application.

For any assistance provided by the Scientific Committee in the name of the FILFOIE Network to any member or partner, the Network must be mentioned “Avec le soutien de la Filière de Santé Maladies Rares FILFOIE“ (With the support of the French Network for Rare Liver Diseases FILFOIE) at any meeting (congress, press conference, etc.) under the conditions previously agreed to between the Parties.

Composition of the Scientific Committee

• Network leader
• Network head of project
• Network head of mission “Research coordination”
• 1 representative for each coordinating centre of reference (CRMR)
• 1 representative from the Medical Biology Laboratory, Pole Biology-Pathology-Pharmacy-Public health, Bicêtre Hospital
• 1 representative from the Shared Molecular Biology and Genetics Laboratory (LCBGM), Saint-Antoine Hospital

Working Groups (WG)

Working Groups will gradually be set up for each action undertaken in order to genuinely progress along the main lines of work provided in the Network action plan (e.g. Transition Working Group).