1. Cancer Registries and Rare Cancers: Data quality and supplementary information Carmen Martínez-García. Granada Cancer Registry. Andalusian School of Public Health. Spain WP6 Second Meeting. Andalusian School of Public Health Granada, 25 March 2009

2. WP6. Objectives To assess the validity, completeness and inter- registry standardisation of population-based cancer registry data on rare cancers. To improve the data quality and comparability of incidence, prevalence and survival of rare cancers among European population-based cancer registries (PBCR).

3. WP6 Partners Gemma Gatta, INT, Project LeaderItaly Franco Berrino, INT, EUROCAREItaly Ricardo Capocaccia, ISSItaly Stefano Ferreti FCR Italy Adriano Giacomin, BCRItaly Torgil Möller, Lund UHSweden Maja Primic Žakelj, IOLSlovenia Jean Michel Lutz, NICERSwizerland Juan A Virizuela (Oncologist), SASSpain Ricardo González-Cámpora (Anatomopath), SASSpain María José Sánchez (Epidemiologist), EASPSpain Juan Manuel Melchor, EASPSpain Carmen Martínez García, EASPSpain Samba Sowe INT

4. To select the same data quality indicators from the PBCR participating in RARECARE To be able to interpret the variability in incidence and survival among these PBCR To propose actions that improve the data’s quality and comparability What do we want?

5. Data Quality.WP6 Indicators used to evaluate completeness and validity in cancer registries: Basis of diagnosis %Microscopically verified cases %Clinical diagnosis %Unknwon %Death Certificate only %Autopsies

6. Data Quality Unknown primary site: C80.0 Ill-defined site: C55.9 (uterus); C76.- (Thorax,…) Ill-defined subsite: 4th digit 8 and 9 Morphology NOS ( 8000/3, 8001/3, 8010/3...) Pathological review of specific cases/markers? Follow up indicators ?

7. Data Quality WP6 What have we done until now? To calculate indicators on basis of diagnosis for some layer 1 categories: Epithelial: C30-31, C11, C07- C08 Mesothelioma Central Nervous system: Glial, Non glial, Meningioma By registry, country and region

8. Data Quality Epithelial Tumour of the Nasal Cavity and Sinuses, by country. 1995-2002

9. Data Quality Epithelial Tumour of the Nasal Cavity and Sinuses, by Area. 1995-2002

10. Data Quality Glial Tumour of the CNS and Pineal Gland, by country. 1995-2002

11. Data Quality Glial Tumour of the CNS and Pineal Gland, by Area. 1995-2002

12. Data Quality WP6 What have we done until now? To “explore” the ill defined sites By registry and country To “explore” the morfology NOS By registry

13. Data Quality i ll-defined sites NumeradorNumerator Overlapping lesion of other and unspecified parts of mouth and Mouth,NOS6.8-6.9 Hypopharynx,NOS13.9 Pharynx,NOS and Overlapping lesion of lip, oral cavity and pharynx14.0-14.8 Overlapping lesion of rectum, anus and anal canal21.8 Intestinal tract, NOS and Gastrointestinal tract, NOS26.0-26.9 Overlapping lesion of heart, mediastinum, and pleura38.8 Upper respiratory tract, NOS-ILL-defined withing respiratory system39.0-39.9 Uterus, NOS55.9 Overlapping lesion of female genital organs- Female genital tract, NOS57.8-57.9 Overlapping lesion of male genital organs- Male genital tract, NOS63.8-63.9 Overlapping lesion of urinary organs-Urinary system, NOS68.8-68.9 Overlapping lesion of brain and central nervous system-Nervous system, NOS72.8-72.9 Overlapping lesion of endocrine glands and related structures-Endocrine gland, NOS75.8-75.9 Head, face or neck, NOS- Overlapping lesion of ill-defined sites76.0-76.8 Unknown primary site80.9

14. Data Quality ill-defined sites. Number of incident cases and percentage by site and Registry. 1995-2002

15. Data Quality WP6 Morphology NOS

16. Data Quality

17. Data Quality.WP6 Proposal of short list of rare cancers of high priority: Mesothelioma: primary prevention Angiosarcoma of the liver: primary prevention Sarcoma: diagnostic accuracy Oral cavity: secondary prevention CNS: appropiateness of treatment Germ cell tumours: appropiateness of treatment Leukaemia: appropiateness of treatment Endocrine tumours: data quality Other sugestions for quality control?

18. Data Quality Report. WP6 The report will include: Results on quality control of rare cancers complet list priority list List of markers that may improve the accuracy of the diagnosis of selected cancers Proposal for improving the quality and comparability in terms of completeness and validity The Report (D15) will be done by October 2009

19. Data Quality Seminar. WP6 Seminar on classification and coding problems for selected rare cancers addressed to profesionals linked with population-based cancer registries. Linked with WP4 and WP5 Collaboration with: European Network of Cancer Registries Northern Cancer Registries Groupe pour l’Epidemiologie et l’Enregistrement du Cancer dans les Pays de Langue Latine (GRELL) The seminar will be due by April 2010

20. Difficulties studying rare cancers: quality and comparability Low number of cases: random variations in incidence and survival, as well as in quality indicators, for small registries Some cancers are new entities that need: technology for diagnosis (laboratory, imaging...) training of professionals training of registrars Some morphological entities in ICD-O-3 don’t exist in ICD-O-1 or ICD-O-2.

22. Comparing data from Population-based Cancer Registries: Art or Science?

23. Comparing data from population- based cancer registries Some aspects to be taken into account when interpreting results from PBCR Socioeconomic conditions and health system in the region Definition of incident case: /0, /1, /2 and /3 Rules for collecting coding and classifying data The “traditional” quality indicators Consider for each age group, site or morphology the circumstances that may be affected by a selection bias

24. When comparing data “each tumour” or group of tumours must be studied using different approaches; taking into account age, risk factors, diagnostic resources (more or less advanced technology), treatment (new drugs, specialized centres for treatment), screening programs in the region (neuroblastoma in children) and other circumstances that may influence incidence and survival Considerations

25. Some sites with special problems Bladder cancer –Not enough tissue for diagnosis of invasion: /2 or /3 ? –Different criteria for coding the cases /1, /2 /3 Ovary cancer –Borderline tumours: /1 in ICD-O-1, /3 in ICD-O-2 Neurological/ Intracranial tumours –Inclusion of /0, /1 and /3 or only /3 Uveal melanoma –Underascertainment when surgery is not performed