Transcript Diapositiva 1

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
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Information network on rare cancers
DEFINITION OF “RARE CANCER”
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Rationale
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Frequency
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Incidence
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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
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About 500,000 new cases
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22% of all new malignancies
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About 4 millions alive with a diagnosis of rare
cancers
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24% of the total cancer prevalence
Information network on rare cancers
RARE CANCERS, burden in Europe
5 YEAR RELATIVE SURVIVAL
Rare cancers
Common cancers
90
80
70
60
%
50
40
30
20
10
0
1
2
3
years
4
5
Information network on rare cancers
Rare cancers
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late or incorrect diagnosis
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limited access to appropriate therapies and clinical expertise
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limited information about the disease
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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
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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 network on rare cancers
Work packages
WP
number
WP name
1
Coordination
2
Dissemination
3
Evaluation
4
5
Information on epidemiology of rare cancers
Information on centres of expertise for rare cancers
6
7
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)
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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
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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 cancers
… we have a lot of expectations
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List of patients associations dedicated to rare cancers
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List of centres of expertise for rare cancers
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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
Maja Primic-Žakelj - Institute of
Oncology Ljubljana (Slovenia)
Harry Comber – Irish
National Cancer Registry
(Ireland)
Riccardo Capocaccia Istituto Superiore di Sanità,
Rome (Italy)
Sabine Siesling - Comprehensive
Cancer Centre the Netherlands
Ellen Benhamou - Institut de
Cancérologie Gustave Roussy,
(France)
Eero Pukkala - Finnish Cancer
Registry, Institute for Statistical and
Epidemiological Cancer Research
(Finland)
Nadia Dimitrova - Bulgarian
National Cancer Registry
(BNCR)
European Cancer Patient Coalition
(ECPC)
Information network on rare cancers
Collaborating partners
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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]
[email protected]
Information network on rare cancers