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INFORMATION NETWORK ON RARE CANCERS ( RARECARENet ) Kick-off meeting - Friday, July 13 2012

INFORMATION NETWORK ON RARE CANCERS ( RARECARENet ) Kick-off meeting - Friday, July 13 2012 Gemma Gatta Fondazione IRCCS, Istituto Nazionale dei Tumori – Milan (Italy). Objectives of the kick-off meeting. to discuss the project among all the project partners

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INFORMATION NETWORK ON RARE CANCERS ( RARECARENet ) Kick-off meeting - Friday, July 13 2012

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  1. INFORMATION NETWORK ON RARE CANCERS (RARECARENet) Kick-off meeting - Friday, July 13 2012 GemmaGatta Fondazione IRCCS, IstitutoNazionaledeiTumori – Milan (Italy)

  2. Objectives of the kick-off meeting • 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

  3. INFORMATION NETWORK ON RARE CANCERS AGENDA

  4. What I amexpectfromthis meeting • Suggestions and comments • Identification of possible problems with solutions • Planning of the interaction between WPs

  5. Background: from RARECARE to RARECARENet

  6. Why rare cancers?

  7. EUROCARE About 100 European cancer registries (in 22 EU Countries) www.eurocare.it

  8. Before RARECARE Survivalofadultpatientswith rare cancer in Europe (EuropeagainstCancerProgramme) with the ENCR (2001-2003) Twounsuccesful FP6 proposals

  9. Several papers on rare cancer survival

  10. Several papers on rare cancer survival

  11. Several papers on rare cancer survival

  12. Several papers on rare cancer survival

  13. RARECARE (2007-2010) RARE DISEASES 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 cancerregistration • To develop strategies for the diffusion of information among all the key players • Essential source of data = population-based cancer registries

  14. DEFINITION AND LIST OF RARE CANCERS • Clinical vs site cancer entities • ICD-O topography and morphology codes • About 220 tumour entities, 186 rare • Threshold: incidence vs prevalence

  15. Incidence vs prevalence

  16. Incidence vs prevalence • 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

  17. Prevalence is not an easy task Complete prevalence Observed prevalence + completeness index N C = NO(L)+ NU(L) 4 models per each entity (around 1000 different models)

  18. Threshold: 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

  19. Cut 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,

  20. Variation depends on: • Risk factors • Population age • Case mix • Availability of expertise • ... In Europe 97/100,000/year

  21. Incidence rates for rare and common cancersAGE

  22. All rare cancers by countryHow many new diagnoses/year

  23. adrenal cancers by countryHow many new diagnoses/year

  24. INCIDENCE Distribution of : Annual number of diagnoses Number of cancer types

  25. Five-year survival of rare and common cancers, by age 5-year survival: common cancers 64% vs rare cancers 48%

  26. Five-year survival (%) by European countrycommon rare

  27. Survival variation between European regions

  28. Survival variation between European regions

  29. Rare 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%

  30. Dissemination

  31. www.rarecare.eu

  32. DisseminationPapers in peer review journals

  33. 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

  34. RARECARE: http://www.rarecare.eu/ Enjoy the meeting!

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