INFORMATION NETWORK ON RARE CANCERS ( RARECARENet ) Kick-off meeting - Friday, July 13 2012
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Transcript of INFORMATION NETWORK ON RARE CANCERS ( RARECARENet ) Kick-off meeting - Friday, July 13 2012
Information network on rare cancers
INFORMATION NETWORK ON RARE CANCERS (RARECARENet)Kick-off meeting - Friday, July 13 2012
Gemma GattaFondazione IRCCS, Istituto Nazionale dei Tumori – Milan (Italy)
Information network on rare cancers
to discuss the project among all the project partners
the Work Package (WP) leaders have been invited:– to describe objectives and activities of
their WPs– to provide a detailed planning of WP
activities
Objectives of the kick-off meeting
Information network on rare cancers
INFORMATION NETWORK ON RARE CANCERS AGENDA
Introduction 10:30 Welcome and objectives of the meeting
G Gatta 10:40 The background (from RARECARE to RARECARENet) G Gatta 11:00 Overview of the RARECARENet project
A Trama 11:20 Discussion Work packages presentations and discussion 11:30 WP 4 Information on epidemiology of rare cancers R Capocaccia/S Mallone 12:00 WP5 Information on centres of expertise for rare cancers S Siesling 12:30 WP6 Information on clinical management of rare cancers L Licitra 13:00 Lunch break 13:45 WP7 Information for patients with rare cancers F De Lorenzo/ J Pelouchová 14:15 WP2 Dissemination
I Kunkler 14:45 WP3 Evaluation G Gatta (on behalf of E Benamou) 15:30 Coffee break 15:45 Practical issues related to RARECARENet implementation
H Mileva/A Trama 16:30 AOB 17:00 Closing remarks
Information network on rare cancers
What I am expect from this meeting
Suggestions and comments Identification of possible problems with
solutions Planning of the interaction between WPs
Background: from RARECARE to RARECARENet
Information network on rare cancers
EUROCARE
About 100 European cancer registries (in 22 EU Countries)
www.eurocare.it
Information network on rare cancers
Survival of adult patients with rare cancer in Europe (Europe against Cancer Programme) with the ENCR (2001-2003)
Two unsuccesful FP6 proposals
BEFORE RARECARE
Information network on rare cancers
Several papers on rare cancer survival
Several papers on rare cancer survival
Several papers on rare cancer survival
Several papers on rare cancer survival
Information network on rare cancers
RARECARE (2007-2010)
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
Essential source of data = population-based cancer registries
RARE DISEASES
Information network on rare cancers
– Clinical vs site cancer entities– ICD-O topography and morphology codes– About 220 tumour entities, 186 rare– Threshold: incidence vs prevalence
DEFINITION AND LIST OF RARE CANCERS
Information network on rare cancers
Incidence vs prevalence
Information network on rare cancers
All rare cancers, but cervix uteri and thyroid carcinoma are also rare according to the European definition
Adenocarcinoma and squamous cell carcinoma of lung, adenocarcinoma of stomach are rare according to the European definition and rare according to the RARECARE definition
Incidence vs prevalence
Information network on rare cancers
Complete prevalence
Observed prevalence + completeness index
N C = NO(L)+ NU(L)
4 models per each entity (around 1000 different models)
Prevalence is not an easy task
Information network on rare cancers
Threshold: issuesThreshold: issues
How many cancer diagnoses refer to rare cancers?
Does rarity affect the possibility to carry out effective research?
Is clinical decision making more difficult?
Threshold for rarity < 6/100.000/year
Information network on rare cancers
Cut point: too highCut point: too high
Threshold of <3/100,000/year instead of <6/100,000/year glial CNS tumours, epithelial cancers of the oral cavity epithelial cancers of gallbladder soft tissue sarcomas tumours of testis carcinomas of endocrine organs Myeloproliferative neoplasms Acute myeloid leukaemia,
Information network on rare cancers
0
20
40
60
80
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140
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Incid
ence
rate
Countries
Crude incidence of rare cancers by country
Variation depends on:•Risk factors•Population age•Case mix •Availability of expertise•...
In Europe 97/100,000/year
Information network on rare cancers
Incidence Incidence rates for rare rates for rare and common cancersand common cancers
AGEAGE
0.1
1
10
100
1000
10000
00-04 05-09 10-14 15-19 20-24 25-29 30-34 35-39 40-44 45-49 50-54 55-59 60-64 65-69 70-74 75-79 80-84 85+
Common
Rare
Information network on rare cancers
All rare cancers All rare cancers by countrycountryHow many new diagnoses/yearHow many new diagnoses/year
Iceland 330
Malta 370
Luxembourg 550
Cyprus 870
Estonia 1500
Slovenia 2000
Latvia 2500
Ireland 3700
Slovakia 4500
Norway 4800
Croatia 4900
Finland 5800
Denmark 6000
Austria 8000
Bulgaria 8200
Switzerland 9700
Sweden 10400
Portugal 10500
Hungary 10900
Czech Rep 11500
Belgium 11800
Greece 12100
Netherlands 17800
Romania 23300
Poland 30500
Spain 51900
UK_England 68000
Italy 80500
France 81000
Germany 117200
EUROPE 27 539000
Information network on rare cancers
adrenal cancersadrenal cancers by by countrycountryHow many new diagnoses/yearHow many new diagnoses/yearIceland 1Malta 1Luxembourg 1Cyprus 1Estonia 2Slovenia 4Latvia 4Ireland 8Croatia 8Norway 9Finland 10Slovakia 10Denmark 10Bulgaria 14Switzerland 14Austria 15
Sweden 17Hungary 18Czech Rep 19Belgium 19Greece 20Portugal 20Netherlands 30Romania 39Poland 69Spain 83Italy 109UK_England 112France 116Germany 147EUROPE 895
Information network on rare cancers
INCIDENCE Distribution of :
0
20
40
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80
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140
160
< 0 .
5
0.5-
1
1-1 .
5
1.5-
2
2-3
3-4
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5-6
6-10
10- 2
0
>20
incidence rate
No
. o
f e
nti
tie
s
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< 0.
5
0.5-
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1-1.
5
1.5-
2
2-3
3-4
4-5
5-6
6-10
10-2
0
>20
incidence rate
An
nu
al N
o. o
f d
iag
no
ses
(th
ou
san
ds)
Number of cancer types Annual number of diagnoses
Information network on rare cancers
Five-year survival of rare and Five-year survival of rare and common cancers, by agecommon cancers, by age
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
0-39 40-59 60-74 75+ All ages
Common
Rare
5-year survival: common cancers 64% 5-year survival: common cancers 64% vsvs rare cancers 48% rare cancers 48%
Information network on rare cancers
Five-year survival (%) by European countrycountry commoncommon rarerare
0 10 20 30 40 50 60 70 80
Slovakia
Slovenia
Poland
UK_Wales
Malta
Netherlands
Spain
UK_England
Portugal
Belgium
France
Iceland
Switzerland
EUROPE
Austria
Sweden
UK_Scotland
Germany
Italy
Norway
UK_Northern Ireland
Ireland
% 0 10 20 30 40 50 60 70 80
Slovakia
UK_Wales
France
UK_England
UK_Scotland
Slovenia
Netherlands
Poland
Switzerland
EUROPE
Portugal
Ireland
Belgium
Germany
Spain
UK_Northern Ireland
Austria
Norway
Italy
Sweden
Malta
Iceland
%
Information network on rare cancers
Survival variation between European regions
Information network on rare cancers
Survival variation between European regions
Information network on rare cancers
Rare cancers burdenRare cancers burden
Incidence = 500,000 new diagnosis/year
22% of all cancer diagnoses/yr
Prevalence = 4 million patients 24% of the total cancer
prevalence Survival = common cancers 64% vs rare cancers 48%
0
20
40
60
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0 1 2 3 4 5 6
rare
common
years
Information network on rare cancers
DisseminationDissemination
www.rarecare.eu
Information network on rare cancers
DisseminationDisseminationPapers in peer review journalsPapers in peer review journals
Information network on rare cancers
RARECARE – WHAT’S ADDED
Put numbers to a problem long known to exist
Show low outcome of rare cancers
Made prevalence available for rare cancers
Identified a new priority for population-based cancer registries
Information network on rare cancers
RARECARE: http://www.rarecare.eu/
Enjoy the meeting!Enjoy the meeting!