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

Information network on rare cancers What kind of information Who should be involved in the network How can we reach the community at large? Presentation topics

Information network on rare cancers Objectives/information on rare cancers To collect and disseminate information on updated epidemiological indicators and on health care pathways for rare cancers and on. To identify the qualification criteria for centers of expertise for rare cancers To produce and disseminate information on diagnosis and management of rare cancers. To develop a clinical database on very rare cancers to provide new knowledge on these diseases and on their clinical management To identify and disseminate information on centers of expertise for rare cancers. To develop and disseminate information for patients

Information network on rare cancers Objectives/information on rare cancers To collect and disseminate information on updated epidemiological indicators and on health care pathways for rare cancers and on. To identify the qualification criteria for centers of expertise for rare cancers To produce and disseminate information on diagnosis and management of rare cancers. To develop a clinical database on very rare cancers to provide new knowledge on these diseases and on their clinical management To identify and disseminate information on centers of expertise for rare cancers. To develop and disseminate information for patients WP4 WP5 WP6 WP7

Information network on rare cancers Work packages WP No/leaderWP name 1/G.GattaCoordination 2/I. KunklerDissemination 3/E. BenhamouEvaluation 4/R. CapocacciaInformation on epidemiology of rare cancers 5/S. SieslingInformation on centres of expertise for rare cancers 6/L. LicitraInformation on clinical management of rare cancers 7/F. De Lorenzo- J. Pelouchová Information for patients with rare cancers

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

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

Information network on rare cancers Information on centres of expertise for rare cancers Identification of qualification criteria for centers of expertise for rare cancers Consensus meeting Pilot study for a subgroup of rare cancers in collaboration with selected cancer registries 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 on diagnosis and management : VERY RARE CANCERS

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

Information network on rare cancers Patient’s engagement Involvement of ECPC in all the different steps of the project ECPC speaking with one voice on behalf of all patients associations dedicated to rare cancers ensuring: – Provision of information about the project and its progresses to all members interested in rare cancers – Involvement of patients associations in specific tasks of the project – Development of a knowledge system – Empowerment of patients and of rare cancers avocates

Information network on rare cancers Who should be involved in the network?

Information network on rare cancers

Mapping of national cancer plans (EPAAC WP10) and national rare disease plans (in Europlan) Harmonisation of stakeholder views on rare disease/cancer policy Alignment of criteria for accreditation of centres of excellence, and criteria for ERN Harmonization of framework for Clinical Guidelines Bridging EU pre- marketing authorization and MS-level post- market authorization Alignment on methodologies for disease registries Evaluate ongoing EU initiatives on cancer/RD on health equity impact Suggested: Joining forces between EUCERD and EPAAC !

Information network on rare cancers

How can we reach the community at large?

Information network on rare cancers Orphanet, RCE EUCERD, EPAAC ECPC (FACE) START, Organisation of European Cancer Institutes (OECI) Scientific societies (ESMO, ESSO, ESTRO…) European School of Oncology (ESO) National and European celebretion The web-site More from WP2 presentation

Information network on rare cancers Thank you for your attention