rarecare project cancer registries and rare cancers: quality of data, supplementary information...
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RARECARE projectRARECARE project
Cancer registries and rare cancers: Cancer registries and rare cancers: quality of data, supplementary informationquality of data, supplementary information
RARECARE WP6, 3RARECARE WP6, 3rdrd meeting meeting
National Institute of Public Health - Warsaw 25thth March 2010
RARECARE progress update and RARECARE progress update and objectives of the meetingobjectives of the meeting
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
Actions To provide figures on incidence, survival, prevalence and
mortality for all rare cancers Data quality will be analysed for a subset of cancers A web-site on rare cancers will be designed to disseminate
results
Duration: 3 years
Surveillance of rare cancer in Europe
One of the major deliverable
Technical report with basic indicatorsfor rare cancers and health care related macro indicators
RARECARE second year projectRESULTS, indicators
IncidenceSurvival PrevalenceMortalitymacroindicators: GDP and TNEH
For 230 rare entities
•Paper with first results of Paper with first results of the project (Lancet)the project (Lancet)•Monograph on rare cancers (BJC)Monograph on rare cancers (BJC)•Contributions to congresses (AIRTum, GRELL, Contributions to congresses (AIRTum, GRELL, ECRD, WEON, ANCR, etc.)ECRD, WEON, ANCR, etc.)
Dissemination of the resultsDissemination of the results
Monograph on rare cancersMonograph on rare cancers
objective to describe the burden of rare cancers in Europe
and to offer an interpretation of the results
Two papers for each rare cancers results and comments provided by epidemiologists commentary from one or more leading clinicians
Clinical commentary Insight into changes in the diagnosis and treatment Reasons for the differences between European
regions
Data quality in rare cancers? Why?Data quality in rare cancers? Why?
rare tumour entities are a combination of ICD-O topography and morphology codes.
topography is detailed to the 4th digit (sub-site)
morphology codes refer to a rare morphology, with well known problems in diagnostic accuracy
the changes of the ICD-O classifications
Data quality1° meeting in Milano 2008, plan of the activities2° meeting in Granada 2009, plan of the data quality study
We invited all the RARECARE registries to participate at this phase of the project Developed a protocol Registries checked their dataPreliminary analysis of the data check Carmen Martinez and her staff analysed the standard quality indicators for the high priority rare tumours
Sandra Deady analysed the EUROCARE-4 low resolution data on rare cancers
Short listShort 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
Data check, registriesData check, registries
•44 registries44 registries accepted to participate accepted to participate
•≈≈50% of the RARECARE registries, 50% of the RARECARE registries,
• 68% of the registries included in 68% of the registries included in
the analysis of the indicatorsthe analysis of the indicators
AIMS AIMS of the meetingof the meeting
To discuss the preliminary results of data To discuss the preliminary results of data quality checkquality check
To plan for further analysisTo plan for further analysis
To disseminate the resultsTo disseminate the results To define possible recommendations for rare To define possible recommendations for rare cancer registrationcancer registrationTo discuss for a seminar on rare cancersTo discuss for a seminar on rare cancers
News from the European News from the European commissioncommission
End of the project 1st AprilPostpone the end of the project to June 2010
Accepted for the WP6 (data quality) only