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

What we have done until nowWhat we have done until now

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

End of the presentation

…

Thank you for coming

…and enjoy the meeting