EPTRI started as an EU funded initiative (ID-EPTRI GA n. 777554) supported by several Governments, National/Regional Bodies, Foundations, Patients Associations, Hospitals, Research Institutions and Universities, through letters of political support (EoS), letters of financial commitment (EoC), declarations of interest and the signature of the Memorandum of Understanding (signed by 114 EU and non-EU Research Organisations). EPTRI is becoming soon a non-profit research organisation incorporated in the form of an Association Internationale Sans But Lucrative (AISBL) governed by Belgian law, based in Leuven.
The EPTRI governance is organised through its statutes and internal procedures, and its management involves different bodies with precise roles and responsibilities.
CENTRAL HUB AND CENTRAL MANAGEMENT OFFICE
The Central Hub is equipped to provide coordination and management of the RI through the EPTRI operational body, the Central Management Office (CMO).
The Central Management Office (CMO) supports the General Assembly and the Board and the implementation of their decisions. The CMO is entrusted with the day-to-day management of the EPTRI AISBL.
The CMO is in charge to:
- conduct day-to-day management, including all administrative acts and other necessary arrangements;
- support the financial and legal activities of the EPTRI AISBL;
- manage the Single Access Point (SAP) of the EPTRI Services;
- coordinate some of the EPTRI services;
- take care of the communication and dissemination activities of the EPTRI AISBL;
- prepare the EPTRI AISBL operational plans;
- implement the decisions of the General Assembly under the direction of the Board.
The General Assembly (GA) is the supreme authority of EPTRI AISBL and is composed of one (1) delegate per Member with voting rights.
The General Assembly elects the President and the Board of Directors. The General Assembly shall endeavour to ensure balance in terms of gender, diversity, geographic coverage, expertise and stakeholder representation.
The General Assembly has all powers except those expressly reserved or delegated to the other bodies of the EPTRI AISBL in its Statutes or by a decision passed by the General Assembly.
The General Assembly meets twice a year and more if required.
BOARD OF DIRECTORS
The EPTRI Board of Directors constitutes the presiding authority of the activities of the organisation in accordance with its Statutes and the decisions of the General Assembly.
The Board is chaired by the President and supported by the Vice-President and Treasurer if appointed. The number of Directors including these two last roles is a minimum of eighteen (18), including at least one lead scientist for each EPTRI Thematic Research Platform and each EPTRI National Nodes, established through a formal agreement between EPTRI members in the same country. The General Assembly decides on the number of the Directors.
The Board meets at least four (4) times a year.
THEMATIC RESEARCH PLATFORMS (TRPs)
Each TRP is coordinated by two Coordinators which are supported by the CMO for operational activities.
- PAEDIATRIC MEDICINES DISCOVERY, which relates to the early-stage discovery and development of druggable molecular targets specific to paediatric disease, as well as discovery of new drugs using models reproducing specific paediatric populations.
- PAEDIATRIC BIOMARKERS AND BIOSAMPLES, performing research to identify, characterise and validate new biomarkers for diagnosis, prognosis, and personalised therapy in paediatric diseases; provide access to/deposit of annotated paediatric biological samples.
- DEVELOPMENTAL PHARMACOLOGY, concerning studies on the pharmacological characteristics of drugs and related body response, based on the knowledge of growth and development/maturation of the organs and functions.
- PAEDIATRIC MEDICINES FORMULATIONS, which develops appropriate age-specific formulations and adequate delivery systems for preterm neonates, infants, toddlers, children and adolescents.
- PAEDIATRIC MEDICAL DEVICES to cover the gap in medical devices tailored for children addressing the changes in growth and psychosocial maturation, physiology, and pathophysiology, and avoid inappropriate repurposing of adult technologies.
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The research centres and institutions involved in paediatric medicine research identified in the different EPTRI Thematic Research Platforms as Research Units are aggregated in each country through the establishment of National Nodes (EPTRI National Infrastructures/N-EPTRIs).
The National Nodes are organised through the institution of a Joint Research Unit (JRU) or equivalent national associations or collaboration agreement with a coordinating Institution.
They have a crucial role in:
- interconnecting Research Units involved in different field of paediatric medicine research and having different level of expertise and organisation;
- supporting the integration efforts of paediatric research organisations at national and regional level, by connecting and facilitating activities not specific for a single Thematic Research Platform;
- defining common priorities and joint research agendas with the Central Management Office, building on the relevant Joint Programming Initiatives;
- implementing joint research agendas with the Central Management Office, when possible, in collaboration with the supporting Member States and Associated Countries and the European Commission.
NATIONAL NODE LIST: