Diapositiva 1

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RARECARE project Proposal for improving data
quality on rare cancers with high priority
Granada, March 25th 2009 Andalusian School of
Public Health
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Rare tumours with high priority

• short list

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Short list

• Mesothelioma
• Liver angiosarcoma
• Sarcomas
• Tumors of oral cavity
• SNC tumours
• Germ cell tumours
• Leukemia
• Endocrine tumours

Primary prevention
Diagnostic accuracy
Secondary prevention
Quality of care
Data quality
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Mesothelioma

• Quality of follow-up (high lethality)
• Accuracy of diagnosis

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Mesothelioma, 3-year relative survival by
registry
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Mesothelioma, 3-year relative survival by
registry
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Angiosarcoma of liver
Anne Marie will refer
Angiosarcoma of liver
Source Lancet Oncol. 2006 Feb7(2)132-40
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Sarcoma

• of sarcoma NOS

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Sarcoma NOS by registry
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Sarcoma NOS by registry
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Tumors of oral cavity

• stage at diagnosis

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Fare con registri di rarecare
M by registry
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CNS tumours

• Benign/borderline/malignant
• ICD-O changes (i.e pilocytic astrocytoma)
• Cultural attitudes of pathologists
• (high variation in survival)
• Quality of follow-up (high lethality)
• Ryszard showed us

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Brain tumours5-year survival in Europe
From 27 to 16 gt20 (Finland, Iceland,
Norway, Ireland, Wales, Austria, Belgium,
Germany, Switzerland, Portugal)
Source Sant et al, EJC, 2008
19.7
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Germ cell tumours

• Ovarian germ cell tumour

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(No Transcript)
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Indicator of data quality

• Inconsistency in diagnosis
• coding criteria
• Geographical variation in incidence

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Indicator of data quality
MV DCO Lost to f-u
Source Lancet Oncol. 2006 Feb7(2)132-40
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Crude and standardised incidence rates range of
incidence across regions (ratio)
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Germ cell tumours

• of morphology NOS
• among the relevant cancer sites

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leukaemia

• of morphology NOS

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of leukaemia NOS by registry
(average 6)
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Conclusion

• Short list (agreement)
• Data quality analysis on information already
  available to registries (ICD-O codes, incidence
  and survival analyses)
• Check of morphology codes NOS and its impact on
  incidence and survival

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Further clinical information to be collected

• Stage
• Treatment
• Hospital for diagnosis and treatment
• Biomarkers?
• Prognostic factors?
• Other?