1. RARECARE project Data quality and supplementary information Granada, March 25 th 2009 Andalusian School of Public Health

2. 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

3. 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

4. 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

5. WPDeliverables and milestonesMonth DisseminationList of scientific meetings fro the dissemination of results 30° DATA QUALITY Report with quality considerations on the available data on rare cancers 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

6. AIMS of the meeting  To discuss on how to improve data quality in rare cancers registration  To agree on a common work for improving data quality  To agree on a protocol for the check of the cases and the collection of further clinical information  To plan a seminar on rare cancers data quality

7. What we have done until now

8. List of rare tumours and rationale

9. List of rare cancers  List of tumour entities  Not a new classification  Rarity determined by frequency: Incidence/Prevalence

10. Frequency  Incidence better indicator for rare cancer  Prevalence better indicator for non neoplastic rare diseases  Therapy indicates the choice of the best indicator  Awareness of regulatory issues on orphan drugs

11. The Way to the list  Proposal from RARECARE WP4 Group of experts (pathologists, oncologists and epidemiologists)  Consensus workshops Brussels and Treviso  WEB based discussion  Consensus with scientific bodies

13. The Rationale behind the List Three layers 1. Families of tumors Tumors characterized by a common referral pattern 2. Tumors perceived by clinicians as a single disease entity 3. WHO coded entities

14. The Rationale behind the List  First layer  common referral pattern. Organization of health care  Second layer  Clinical decision making; clinical research  Third layer  all WHO tumor entities

15. Rare tumours, short list Rare tumours, short list (WP4, Dei Tos) proposal

16. criteria  Primary prevention  Secondary prevention  Diagnostic accuracy  Quality of care  Clinical research feasibility  Data quality

17. Criteria, Criteria, primary prevention  Mesothelioma (asbestos)  Liver angiosarcoma (vinyl chloride)

18. Criteria, Criteria, diagnostic accuracy  Sarcomas

19. Criteria, Criteria, secondary prevention  Tumors of oral cavity

20. Criteria, Criteria, Quality of care  SNC tumors  Germ cell tumors  Leukemia

21. Other criteria?  Data quality (merkel skin, haematologic tumours, GIST, neuroendocrine tumours)

22. Second year major activity Deliverable no. 13 Technical report with basic indicators for rare cancers and health care related macro indicators To be provided within the 24° month

23. RARECARE second year project RESULTS, indicators  Incidence  Survival  Prevalence  Mortality  % of cured For 230 rare entities

24. Results, lay out Incidence, prevalence and mortality table

25. Survival Tables

26. Further information from CRs  Stage  Treatment  Hospital for diagnosis and treatment  Biomarkers?  Prognostic factors?  Other? Sandra

27. End of the presentation …and again

28. Thank you for coming …and enjoy the meeting