Information network on rare cancers RARECARENet Annalisa Trama

Information network on rare cancers RARECARENet Annalisa Trama, Gemma Gatta Fondazione IRCCS Istituto Nazionale dei Tumori, Milan (Italy)

RARECARE “Surveillance of rare cancers in Europe” Aims To provide a definition of “rare cancers” and a list of cancers To estimate the burden of rare cancers in Europe To improve the quality of data in cancer registration To develop strategies for the diffusion of information among all the key players Information network on rare cancers

DEFINITION OF “RARE CANCER” l Rationale – Frequency l – Incidence l l – – Rare cancers are those cancers that present specific problem in clinical decision making, health care organization and clinical research because of their low frequency Incidence better indicator for rare cancer Prevalence better indicator for non neoplastic rare diseases Threshold for rarity = 6/100. 000/year 186 rare cancers Information network on rare cancers

Information network on rare cancers

RARE CANCERS, burden in Europe l About 500, 000 new cases l 22% of all new malignancies About 4 millions alive with a diagnosis of rare cancers 24% of the total cancer prevalence Information network on rare cancers

RARE CANCERS, burden in Europe 5 YEAR RELATIVE SURVIVAL Information network on rare cancers

Rare cancers l late or incorrect diagnosis l limited access to appropriate therapies and clinical expertise l limited information about the disease l lack of clinical trials Information network on rare cancers

RARECARENet

Aim building an information network to provide comprehensive information on rare cancers to the community at large Information network on rare cancers

Information on rare cancers l l updated epidemiological indicators health care pathways for rare cancers centres of expertise clinical diagnosis and management (including very rare cancers) l information for patients – list of centres of expertise – list of patient’s associations Information network on rare cancers

Work packages WP WP name number 1 Coordination 2 Dissemination 3 Evaluation 4 5 Information on epidemiology of rare cancers Information on centres of expertise for rare cancers Information on clinical management of rare cancers Information for patients with rare cancers 6 7 Information network on rare cancers

Information on epidemiology (1) EUROCARE 5 100 cancer registries 22 european countries Information network on rare cancers

Information on epidemiology (2) l Description of the health care pathway of rare cancers High resolution study with a selected group of cancer registries Analysis on the association between outcome and hospital caseload/volume of cases Information network on rare cancers

Information on centres of expertise for rare cancers l Identification of qualification criteria for centers of expertise for rare cancers First consensus meeting High resolution study on a selected group of cancer registries Final Consensus meeting EUCERD Recommendations on Quality Criteria for Centres of Expertise for Rare Diseases in Member States Information network on rare cancers

information on diagnosis and management (1) Information network on rare cancers

Information for patients with rare cancer … we have a lot of expectations l List of patients associations dedicated to rare cancers l List of centres of expertise for rare cancers l Information materials on rare cancers Information network on rare cancers

Coordination with other initiatives Information network on rare cancers

Information network on rare cancers

Information network on rare cancers

Information network on rare cancers

Information network on rare cancers

Who will work with us? Lisa Licitra - Fondazione IRCCS Istituto Nazionale dei Tumori, Milan (Italy) Ian Kunkler - The University of Edinburgh, Scotland, United Kingdom Sabine Siesling - Comprehensive Cancer Centre the Netherlands Ellen Benhamou - Institut de Cancérologie Gustave Roussy, (France) Maja Primic-Žakelj - Institute of Oncology Ljubljana (Slovenia) Eero Pukkala - Finnish Cancer Registry, Institute for Statistical and Epidemiological Cancer Research (Finland) Harry Comber – Irish National Cancer Registry (Ireland) Nadia Dimitrova - Bulgarian National Cancer Registry (BNCR) Riccardo Capocaccia Istituto Superiore di Sanità, Rome (Italy) European Cancer Patient Coalition (ECPC) Information network on rare cancers

Collaborating partners l l l Rare Cancers Europe (RCE) European Partnerships for Action Against Cancer (EPAAC) European Society of Surgical Oncology (ESSO) European School of Oncology (ESO) Institut National de la Santé et de la Recherche Médicale (INSERM)- Orphanet Centre Léon Bérard Surveillance of Cancers in Europe (EUROCARE) European Society for Medical Oncology (ESMO) Leuka. NET European Cancer Organisation (ECCO) European Society for Therapeutic Radiology and Oncology (ESTRO) Information network on rare cancers

Thank you for your attention www. rarecare. eu Annalisa. trama@istitutotumori. mi. it Gemma. gatta@istitutotumori. mi. it Information network on rare cancers