WP01 - Coordination

Leader: Paolo Casali, Annalisa Trama, Marco Asioli

Work Package 1 (coordination)

The WP1 will ensure coordination among JARC partners and coordination of JARC with the current CanCon

Joint Action, the Joint Action on rare diseases and other ongoing initiatives and projects devoted to rare cancers, rare diseases and childhood cancers in Europe, and will oversee the overall technical/scientific and budgetary management of the project.

Fondazione IRCCS Istituto Nazionale dei Tumori (INT) will lead this WP. The Co-ordinator will be supported by the project management team (PMT) to fulfil administrative tasks, the Steering Committee (SC) to make strategic decisions and by an advisory board involving patients associations (European Cancer Patients Coalition (ECPC), EURORDIS, Childhood Cancer International (CCI-Europe)) to ensure patients perspectives since the beginning of the project and along the different activities of each Work Package (WP).

The PMT includes the coordinator, a project manager and a financial officer. The PMT will be in charge of the day-to-day operational management. The PMT supports the coordinator, the SC, the WP Leaders and all partners.

The SC will consist of the PMT and WP Leaders and will be the decision-making body of the project. The first SC meeting will be chaired by the Co-ordinator and decision for the designation of the chairing of other SC meetings will be taken at the first meeting. All WP leaders will have equal voting rights. The SC will be responsible for all strategic planning, ensuring that the timetable is maintained and that the milestones are met and that corrective actions will be taken if necessary. It will receive all reports and other outputs for quality control.

The General Assembly including all associated and collaborating partners will be annually convened, back to back the SC meetings. The first General Assembly meeting (kick-off meeting) will aim at discussing JARC proposal and partner’s roles and collaborations. The other General Assembly meetings will allow to share progresses and decide on future actions to be taken cooperatively.

The internal communication will be ensured by the development of a mailing list including all partners (associated and collaborating) which will be continuously updated and used to share communication relevant to all partners. Each WP Leader will be responsible for the communication with the WP-specific partners. A mailing list dedicated to WP Leaders only will also be developed and regular WP Leader teleconferences will be organised to exchange WP information efficiently.

The Co-ordinator will regularly report the progresses and decisions of the SC to the EU Group of Experts on Cancer. A representative of the board of MS on ERN will be also invited to join the SC.

The co-ordinator will organise the European Conference on Rare Cancers will be held at the end of the Joint Action (JARC final meeting) in collaboration with WP2 partners.

Description of INT

Fondazione IRCCS Istituto Nazionale dei Tumori, Milano, Italy (INT) is the largest Comprehensive Cancer Centre (CCC) in Italy. Since its establishment in 1928, INT has aimed to provide the highest standards of cancer care and to pursue pre-clinical and clinical research in such a way as to swiftly translate innovation into better prevention, diagnosis, therapy and rehabilitation for cancer patients. INT has a long-standing record on rare cancers, serving as one of the Italian reference centers for several rare cancers, including childhood cancers, sarcomas, head & neck cancers, peritoneal and pleural mesothelioma and thymoma, neuroendocrine tumors, male genital tumors, rare female genital cancers, lymphomas and myeloma.

INT coordinates the Italian Rare Cancer Network, a healthcare national network exploiting telemedicine for distant rare cancer case-sharing between reference centers and medical oncology facilities.

In addition to national projects dedicated to rare cancers INT co-ordinated the RARECARE and RARECARENet projects funded by the European Commission. It is also involved in the evaluation of public health activities related to cancer in Italy, Europe and extra-European countries. INT participates in several national and international projects estimating cancers indicators and comparing them across EU and extra EU countries.

Moreover INT hosts and coordinates the project “State-of-the-art oncology in Europe” (START). START is intended as a state-of-the-art knowledge base to support oncologists in their clinical decisions and is currently devoting its efforts completely to rare cancers.