information network on rare cancers rarecarenet annalisa trama, gemma gatta fondazione irccs...

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

Annalisa.trama@istitutotumori.mi.itGemma.gatta@istitutotumori.mi.it