information network on rare cancers rarecarenet annalisa trama, gemma gatta fondazione irccs...
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Information network on rare cancers RARECARENet
Annalisa Trama, Gemma GattaFondazione IRCCS Istituto Nazionale dei Tumori, Milan (Italy)
Information network on rare cancers
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
Rationale
– Frequency 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 Incidence better indicator for rare cancer Prevalence better indicator for non neoplastic rare diseases
– Threshold for rarity = 6/100.000/year– 186 rare cancers
DEFINITION OF “RARE CANCER”
Information network on rare cancers
Information network on rare cancers
RARE CANCERS, burden in Europe
About 500,000 new cases
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 Europe5 YEAR RELATIVE SURVIVAL
Information network on rare cancers
Rare cancers
late or incorrect diagnosis
limited access to appropriate therapies and clinical expertise
limited information about the disease
lack of clinical trials
RARECARENet
Information network on rare cancers
building an information network to provide comprehensive information on rare cancers to the community at large
Aim
Information network on rare cancers
updated epidemiological indicators health care pathways for rare cancers centres of expertise clinical diagnosis and management (including very rare cancers) information for patients
– list of centres of expertise– list of patient’s associations
Information on rare cancers
Information network on rare cancers
Work packages
WP number
WP name
1 Coordination
2 Dissemination
3 Evaluation
4 Information on epidemiology of rare cancers5 Information on centres of expertise for rare cancers
6 Information on clinical management of rare cancers 7 Information for patients with rare cancers
Information network on rare cancers
Information on epidemiology (1)
EUROCARE 5100 cancer registries22 european countries
Information network on rare cancers
Information on epidemiology (2)
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
Identification of qualification criteria for centers of expertise for rare cancersFirst consensus meeting
High resolution study on a selected group of cancer registries
EUCERD Recommendations on Quality Criteria for Centres of Expertise for Rare Diseases in Member States
Final Consensus meeting
Information network on rare cancers
information on diagnosis and management (1)
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
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)
Sabine Siesling - Comprehensive Cancer Centre the Netherlands
Ian Kunkler - The University of Edinburgh, Scotland, United Kingdom
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
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) LeukaNET 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
[email protected]@istitutotumori.mi.it