The Institut Robert-Debré du Cerveau de l’Enfant aims to build bridges between the public and private sectors, as demonstrated by the composition of its governance and management bodies.
This structure is crucial to the smooth operation of the Institute. It ensures efficient management of resources, optimizing funding and maximizing scientific results.
Strong governance ensures transparency and accountability, reinforcing the trust of patients, partners and investors. It facilitates strategic decision-making, aligning research objectives with societal needs around the child's brain.
Finally, it fosters an ethical and collaborative work environment, essential for attracting and retaining top talent.
Since its creation, the Institute has been supported by its five founding members (Assistance Publique - Hôpitaux de Paris • Inserm • Université Paris Cité • CEA • Institut Pasteur) and by private partners and sponsors. It has eight decision-making and consultative bodies that decide on its strategy and operations:
Decision-making bodies:
Supervisory Board (SB), the decision-making body
Executive Committee, the operational body
Consultative bodies:
Scientific Board
Founders' Bureau
Innovation Committee
Family and Children's Committee
Ethics and Scientific Integrity Committee
Data Management Committee
An important role has been given in governance to the participation of representatives of the people concerned (presence on the supervisory board and extended executive committee, creation of a children's and families' committee) in a process of co-construction and participative research.
ICE's Supervisory Board consists of the following members:
Adrien TAQUET, Chairman of the Supervisory Board
Fiona FRANCIS, Director of the Institute
The five representatives of the founding organizations:
The two members of the Family and Children's Committee:
The representative of researchers and faculty members: Mireille LAFORGE, a researcher at the CNRS and head of the 3I Brain team at NeuroDiderot.
State representative: Samuel GUIBAL, Regional Academic Delegate for Research and Innovation (DRARI).
The four expert members:
The Executive Committee is composed of:
· from the director of theIHU : Fiona Francis
- IHU medical director: Pr Richard Delorme (child psychiatrist, head of the Centre of Excellence for Autism / Robert-Debré University Hospital AP-HP - Université Paris Cité)
- translational scientific director: Pr Thomas Bourgeron (geneticist - director of the CNRS / Université Paris Cité - UMR3571 Unit: Human Genetics and Cognitive Functions - Institut Pasteur)
- preclinical research director: Pr Stéphane Auvin (INSERM Neurodiderot UMR1141, Université Paris Cité, pediatric neurology, Hôpital Universitaire Robert-Debré AP-HP)
- Executive Director: Marianne Perreau-Saussine (AP-HP)
This executive committee is expanded once a month to include project leaders and two representatives of those concerned.
President of the Scientific Board of the Institut Robert-Debré du Cerveau de l’Enfant : Pr Ingeborg Kraegeloh-Mann. She is consulted whenever necessary, and at least once or twice a year.
Members:
Petra Hüppi, University of Geneva > Pediatrics (Switzerland)
Vincent Desportes, Hospices civils de Lyon > Neuropediatrics, head of the DIU de neuropédiatrie (France)
Sébastien Jacquemont, University of Montreal > Genetics and neurodevelopment (Canada)
Jonathan Green, University of Manchester > Child and adolescent psychiatry (United Kingdom)
Sid Kouider, CNRS/ENS, Paris > Cognitive sciences (France)
Manuela Piazza, University of Trento > Developmental Cognitive Sciences (Italy)
Michela Matteoli, Humanitas University > Preclinical (Italy)
The Institut Robert-Debré du Cerveau de l’Enfant has been supported since its inception by five founding members. We would like to thank them for the support and confidence they have shown since the Institute's inception:
Assistance Publique - Hôpitaux de Paris - Inserm - Université Paris Cité - CEA - Institut Pasteur
The role of the Founders' Bureau is to facilitate coordination between the parties on specific issues identified by the Executive Committee.
Its members are:
Milan Lazarevic, Director of Clinical Research and Innovation at AP-HP
Prof. Sabine Sarnacki, Dean of the Faculty of Health at Université Paris-Cité
Prof. Matthieu Resche-Rigon, Dean of the Faculty of Health at Université Paris-Cité
Hélène Gilardi, Director of the AP-HP Nord University Hospital Group – Paris-Cité University
Thomas Lombes, Deputy Director General for Strategy at Inserm
Prof. Etienne Hirsch, Director of the Inserm Institute of Neurosciences, Cognitive Sciences, Neurology, and Psychiatry
Prof. Christophe d’Enfert, Scientific Director at the Pasteur Institute
Samuel Valcke, General Counsel at the Pasteur Institute
Dr. Philippe Vernier, Research Director at the CNRS
Dr. Anne-Isabelle Etienvre, Research Director at the CEA
Fiona Francis, Director of the Institute Robert-Debré du Cerveau de l’Enfant
Marianne Perreau-Saussine, Executive Director of the Institute Robert-Debré du Cerveau de l’Enfant
The Innovation Committee is made up of one or more members of the Executive Committee and representatives of other parties:
A representative of the Transfer and Innovation Department of the AP-HP Clinical Research, Innovation and Relations with Universities and Research Organizations Directorate (DRCI).
A representative of the AP-HP DRCI Partnerships and Expertise Department
One representative each from Université Paris Cité, Inserm-Transfert, CEA and Institut Pasteur
Their role is to facilitate joint monitoring of ongoing value-added activities, and to develop value-added products for the benefit of the Institute.
The role of the Family and Children Committee is to ensure that the Institute fully integrates the needs of patients, children and their parents at every stage of research. It is consulted as soon as necessary after referral by the Executive Committee, and is made up of seven representatives of the diversity of neurodevelopmental disorder pathologies, appointed for 4 years by the Executive Committee:
A prefiguration committee has been in place since January 2024 with experts and representatives of the people concerned.
Stéf Bonnot-Briey Consultant and trainer, Stéf Bonnot-Briey is an expert in the field of autism. In charge of network and quality development within the AFG-Autisme's core business, she leads a reflection on the implementation of more inclusive systems for the employment of autistic people in the mainstream environment.
Pr Pierre Fenaux and Sophie Biette (UNAPEI) : Head of the Senior Hematology Department at Hôpital Saint-Louis AP-HP, Pr Pierre Fenaux is also involved in translational research in the field of MDS and acute myeloid leukemia. He is a founding member and Chairman of the French MDS Group (GFM).
Sophie Biette is the first vice-president of Unapei's board of directors.
Christine Getin: Director of HyperSupers TDAH France since April 2023, after serving as President from its creation in 2002 until April 2023. Christine Getin is also the mother of a child with ADHD.
Thomas Sannié is in charge of patient partnerships at the Pôle de ressources en éducation thérapeutique du patient Ile-de-France. He is also volunteer manager of the Alliance franco-africaine pour le traitement de l'hémophilie at the Association française des hémophiles (AFH), and a member of the Board of Directors of the Etablissement français du sang (EFS).
Nathalie Groh is President of the French Dys Federation (Dyslexies et Troubles du Neurodéveloppement).
The role of the Ethics and Scientific Integrity Committee is to monitor the links of interest between members of the Supervisory Board, the Executive Committee and the SAB. It will be set up in 2025.
This consultative body is responsible for implementing the Institute's policy on scientific integrity and preventing conflicts of interest.
Its role is to ensure that regulations are applied with regard to data processing (compliance with the Data Protection Act LIL, GDPR, etc.). It will be implemented in 2025.
