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)

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

Objectives/information on rare cancers l To collect and disseminate information on updated epidemiological indicators and on health care pathways for rare cancers and on. l To identify the qualification criteria for centers of expertise for rare cancers l 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 l l l 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 l WP To collect and disseminate information on updated epidemiological indicators and on health care pathways 4 for rare cancers and on. l To identify the qualification criteria for centers of expertise for rare cancers l 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 l l l To identify and disseminate information on centers of expertise for rare cancers. To develop and disseminate information for patients WP 5 WP 6 WP 7 Information network on rare cancers

Work packages WP No/leader WP name 1/G. Gatta Coordination 2/I. Kunkler Dissemination 3/E. Benhamou 4/R. Capocaccia 5/S. Siesling Evaluation 6/L. Licitra 7/F. De 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 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 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 l 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 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

Patient’s engagement l Involvement of ECPC in all the different steps of the project l 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

Information network on rare cancers

Information network on rare cancers

Information network on rare cancers

Information network on rare cancers

Suggested: Joining forces between EUCERD and EPAAC! l l l l Mapping of national cancer plans (EPAAC WP 10) 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 Information network on rare cancers

Information network on rare cancers

Information network on rare cancers

How can we reach the community at large? Information network on rare cancers

l l l l Orphanet, RCE EUCERD, EPAAC More from ECPC (FACE) WP 2 Cancer START, Organisation of European presentation Institutes (OECI) Scientific societies (ESMO, ESSO, ESTRO…) European School of Oncology (ESO) National and European celebretion The web-site Information network on rare cancers

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