1. RARECARE project Cancer registries and rare cancers: quality of data, supplementary information RARECARE WP6, 3 rd meeting th National Institute of Public Health - Warsaw 25 th March 2010

2. RARECARE progress update and objectives of the meeting

3. 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

4. What we have done until now

5. WPDeliverables and milestonesMonth Coordination Management committee member list and date of the first meeting 2° DATA QUALITY Minutes of the meeting with cancer registries available to work on quality analysis 6° DisseminationDescription of the project for the web 12° CoordinationFirst interim report 12° Dissemination Release of the web-site to the public 12° Evaluation Steering Committee member list, 1° meeting, and minutes of the meeting, list of performance indicators 12° 1° year of activities

6. WPDeliverables and milestonesMonth WP4 (List) List of rare cancers 18° DATA QUALITY Meeting with cancer registries available to work on data quality 24° DisseminationPublication plan 24° Coordination + WP5 (indicators) Technical report of the basic/macro indicators of rare cancers and second interim report 24° WP4 (List) Short list of rare cancer with high priority 24° Evaluation Steering Committee member list, 1° meeting, and minutes of the meeting, list of performance indicators 12° 2° year of activities

7. WPDeliverables and milestonesMonth DisseminationList of scientific meetings for the dissemination of results 30° DATA QUALITY Report on data quality 30° DATA QUALITY Promotion of the first seminar on classification and coding problems addressed to CRs people 36° Coordination Final report 36° 3° year of activities

8. One of the major deliverable Technical report with basic indicators for rare cancers and health care related macro indicators

9. RARECARE second year project RESULTS, indicators  Incidence  Survival  Prevalence  Mortality  macroindicators: GDP and TNEH For 230 rare entities

12. Paper with first results ofPaper with first results of the project (Lancet) Monograph on rare cancers (BJC)Monograph on rare cancers (BJC) Contributions to congresses (AIRTum, GRELL, ECRD, WEON, ANCR, etc.)Contributions to congresses (AIRTum, GRELL, ECRD, WEON, ANCR, etc.) Dissemination of the results

13. Monograph 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

14. To assure the continuation of the RARECARE project: Operating grant Last week we sent a proposal for an operating grant operating grant with the OECI (1 year) Aims:  Dissemination  Training  RARECARE meeting for a second project Health Programme: 2010 Call

15. 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

16. Data quality issues  Quality of diagnosis  Completeness of incidence  Quality of follow-up

17. Data quality 1° meeting in Milano 2008, plan of the activities 2° 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 data  Preliminary 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

18. 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

19. Data check, registries 44 registries accepted to participate 44 registries 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 indicators

20. AIMS of the meeting  To discuss the preliminary results of data quality check  To plan for further analysis  To disseminate the results  To define possible recommendations for rare cancer registration  To discuss for a seminar on rare cancers

21. News from the European commission  End of the project 1 st April  Postpone the end of the project to June 2010 Accepted for the WP6 (data quality) only

22. End of the presentation …

23. Thank you for coming …and enjoy the meeting