Table Of Content. Information network on rare cancers... 2 Summary... 3 Coordinator, Leader contact and partners Outputs...

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1 Table Of Content Information network on rare cancers... 2 Summary... 3 Coordinator, Leader contact and partners... 5 National University Specialised Hospital for Active Treatment in Oncology - NOH... 5 The University of Edinburgh - UEDIN... 5 Cancer Society of Finland Institute for Statistical and Epiedemiological Cancer Research - CSF... 5 National Cancer Registry - NCR... 5 Institute of Oncology Ljubljana - OILJ... 5 European Cancer Patient Coalition - ECPC... 5 Istituto Superiore di Sanità - ISS... 5 Institut de Cancérologie Gustave Roussy - IGR... 5 Integraal Kankercentrum Nederland - IKNL... 5 Outputs... 7 D01 - Project leaflet M D02 - Informative materials for patients... 7 D03 - Interim technical and financial report... 7 D04 - Report on the health care pathway study and on the updated epidemiological indicators... 7 D05 - START chapters on rare cancers... 7 D06 - Database on very rare cancers... 7 D07 - Report identifying criteria indicating the level/quality of expertise for rare cancers management... 7 D08 - List of centers of expertise for rare cancers... 7 D09 - Evaluation report M D10 - Final technical and financial report M Page 1/8

2 Information network on rare cancers JA GPSD [705038] START DATE: 01/05/2012 END DATE: 01/05/2016 DURATION: 48 month(s) CURRENT STATUS: Finalised PROGRAMME TITLE: Second Programme of Community action in the Field of Health PROGRAMME PRIORITY: - CALL: Promote Health (Hp-2010) TOPIC: IMPROVE CITIZEN'S HEALTH SECURITY (HS-2011) EC CONTRIBUTION: EUR KEYWORDS: Cancer, Diagnostic, Healthcare, Rare diseases and disorders, Treatment PORTFOLIO: Rare diseases Page 2/8

3 SUMMARY General objectives The project aims at building an information network to provide comprehensive information on rare cancers to the community at large (oncologists, general practitioners, researchers, health authorities, patients). The final objectives are to improve the timeliness and accuracy of diagnosis, to facilitate the access to high quality treatment for patients with rare cancers, to identify centres of expertise for rare cancers in Europe and to standardize practices across Member States (MS). Strategic relevance and contribution to the public health programme Rare diseases including rare cancers are a priority for action in the Public Health Programme ( ). The importance of providing accurate information on rare diseases to all European citizens is clearly stated in the Communication of the European Commission Rare Diseases: Europe s challenge" and in the Recommendations from the Council. This project will closely collaborate with the European Partnership for Action Against Cancer (EPAAC). Thus, in accordance with the Second Health Programme (SHP) and Annual Work Plan, it will contribute to health protection and safety of citizens through actions in the field of cancer. It will help to identify the causes of inequalities in the area of rare cancers, monitoring incidence, survival and prevalence, within the EU and to exchange the best practices to tackle them. The proposed network will increase the existing information about rare cancers and will support a practical use of the information produced in different European countries. Methods and means Information on the hospital of treatment will be collected by cancer registries (CRs) in a subset of countries. The association between outcome and hospital case volume will be analyzed. The criteria to identify centres of expertise for rare cancers, in accordance with the European Reference Network on all rare diseases, will be defined by a specific working group including all concerned stakeholders.for a subset of rare cancers, the criteria identified will be tested collecting relevant information in collaboration with CRs. From the identified criteria, a list of centres of expertise will be developed by the European Cancer Patient Coalition (ECPC) conducting a survey among members.experts will be invited to revise the list of rare cancers.updated incidence, prevalence and survival figures for Europe will be provided using the most recent EUROCARE database. Information on diagnosis and treatment of rare cancers will be developed by the project State-of-the-Art Oncology in Europe (START).New knowledge on very rare cancers will be produced developing a prospective clinical database. Page 3/8

4 Expected outcomes period The proposed network is expected to contribute to: promote better classification of rare cancers complementing the EU dynamic inventory of rare diseases developed by the portal for rare disease Orphanet produce and disseminate information material about rare cancers building a knowledge system involving all concerned stakeholders ameliorate diagnosis, treatment and referral of patients with rare cancers to appropriate centres of expertise promote international collaborative groups to foster research on very rare cancers identify determinants of variations in survival across Europe and develop recommendations to improve the situation reducing health inequalities across Europe support better health care planning and resource allocation for rare cancers empower patients Page 4/8

5 COORDINATOR, LEADER CONTACT AND PARTNERS COORDINATOR (Fondazione IRCCS "Istituto Nazionale dei Tumori") Via Venezian Milano Italy Project leader contact Name: Gatta Gemma gemma.gatta@istitutotumori.mi.it Phone: PARTNERS National University Specialised Hospital for Active Treatment in Oncology - NOH Street: 6 Plovdivsko Pole Str. City: 1756 Sofia Country: Bulgaria The University of Edinburgh - UEDIN Street: Old College, South Bridge City: EH8 9YL Edinburgh Country: United Kingdom Cancer Society of Finland Institute for Statistical and Epiedemiological Cancer Research - CSF Street: Pieni Roobertinkatu 9 City: FI Helsinki Country: Finland Page 5/8

6 National Cancer Registry - NCR Street: Building 6800, Cork Airport Business Park City: 6800 Cork Country: Ireland Institute of Oncology Ljubljana - OILJ Street: Zaloška 2 City: 1000 Ljubljana Country: Slovenia European Cancer Patient Coalition - ECPC Street: Oosterhaven 29 City: 1671AB Medemblik Country: Netherlands Istituto Superiore di Sanità - ISS Street: Viale Regina Elena, 299 City: Rome Country: Italy Institut de Cancérologie Gustave Roussy - IGR Street: 114 Rue Edouard Vaillant City: Villejuif Country: France Integraal Kankercentrum Nederland - IKNL Street: NL 19 RABO City: 3511 GD Utrecht Country: Netherlands Page 6/8

7 OUTPUTS D01 - Project leaflet M8 D02 - Informative materials for patients D03 - Interim technical and financial report D04 - Report on the health care pathway study and on the updated epidemiological indicators D05 - START chapters on rare cancers D06 - Database on very rare cancers Page 7/8

8 Powered by TCPDF ( D07 - Report identifying criteria indicating the level/quality of expertise for rare cancers management D08 - List of centers of expertise for rare cancers D09 - Evaluation report M42 D10 - Final technical and financial report M42 Page 8/8