WP04 - Epidemiology

Leader: Gemma Gatta, Annalisa Trama

Fondazione Istituto Nazionale Tumori, leader of the WP

Fondazione Istituto Nazionale Tumori, Milano, Italy (INT) is the largest comprehensive cancer centre in Italy. Since its establishment (1928), it 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 Italian 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, i.e., a healthcare national network exploiting telemedicine for distant rare cancer case-sharing between reference centers and medical oncology facilities.

Work Package 4 - epidemiology

The WP will work to:

  • provide an operational definition of rare cancers based on the previous experience of RARECARE and RARECAREnet projects. Definition and list have to obtain the endorsement of MSs and will be used for public health issues, development of ERN, the orphan drug designation process, and epidemiological surveillance (first task);
  • improve rare cancer registration in population based cancer registries, aimed at monitoring the burden of rare cancers and interpreting epidemiological differences in incidence and survival across countries (second task);
  • provide recommendations to the methodology for estimating solid epidemiologic descriptive and outcome indicators for rare cancers (third task);
  • study a model to evaluate the impact of ERN by the linkage of population based cancer registries and clinical databases (forth task).

The Fondazione IRCCS Istituto Nazionale dei Tumori (INT), Evaluative Epidemiology Unit is the leader of the WP.

The following Institutes are leaders of the WP tasks:

  • - Fundacion para la Formacion e Investigacion Sanitarias de la Region de Murcia, task 2 responsible;
  • - Escuela Andaluza de Salud Publica with the INT, task 3 responsible;
  • - Universitat de Valencia, task 4 responsible.

Many other partners will collaborate with WP4: European network of cancer registries, SIOP Europe, Institute National du Cancer, Ethniko Kai Kapodistriako Panepistimio Athinon, Institut National de la Sante et de la Recherche Medicale, Institute Scientifique de la Sante Publique, Fundacion para el Fomento de la Investigacion Sanitaria y Biomedica de la Comunitat Valenciana, Ministry of Health of the Czech Republic, Hrvatski Zavod za Javno Zdravstvo, Szegedi Tudomanyegyetem, Suomen Syopayhdistys Ry, Viesoji Istaiga Vilniaus Universiteto Ligonines Santariskiu Klinikos, Ministry for Health of Malta, Deutsche Krebsgesellschaft e.V., Ministry of Health of the Republic of Cyprus, National Cancer Registry Board, Ministero Italiano della Salute, Institut Catala d'Oncologia.