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					Cancer Registries and Rare Cancers:
  Data quality and supplementary
            information

   WP6 Second Meeting. Andalusian School of Public Health
                                   Granada, 25 March 2009

                                         Carmen Martínez-García.
                                         Granada Cancer Registry.
                          Andalusian School of Public Health. Spain
        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).
                    WP6 Partners
• Gemma Gatta, INT, Project Leader                      Italy
• Franco Berrino, INT, EUROCARE                 Italy
• Ricardo Capocaccia, ISS                               Italy
• Stefano Ferreti FCR                                   Italy
• Adriano Giacomin, BCR                                 Italy
• Torgil Möller, Lund UH                                Sweden
• Maja Primic Žakelj, IOL                               Slovenia
• Jean Michel Lutz, NICER                               Swizerland
• Juan A Virizuela (Oncologist), SAS                    Spain
• Ricardo González-Cámpora (Anatomopath), SAS           Spain
• María José Sánchez (Epidemiologist), EASP             Spain
•Juan Manuel Melchor, EASP                              Spain
• Carmen Martínez García, EASP                          Spain
          Samba Sowe INT
      What do we want?
• 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
          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
                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 ?
      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
                         Data Quality
Epithelial Tumour of the Nasal Cavity and Sinuses, by country. 1995-2002



                    0%   20%   40%    60%     80%     100%
               AUSTRIA


                FRANCE


               ICELAND


                 ITALY


            NETHERLAND                                       MC
               POLAND                                        CD
              SLOVENIA
                                                             UK

               SWEDEN


            UK_ENGLAND


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




             EU Overall

 UK and Northern Ireland

       Southern Europe                                              MC
                                                                    CD
         Eastern Europe                                             UK

         Central Europe

        Northern Europe

                           0%   20%   40%   60%    80%       100%
                              Data Quality
Glial Tumour of the CNS and Pineal Gland, by country. 1995-2002

                         0%   20%   40%   60%   80%   100%
                    AUSTRIA


                    BELGIUM


                    FRANCE


                   GERMANY


                    ICELAND


                    IRELAND


                      ITALY


                     MALTA


                NETHERLAND


                    NORWAY
                                                             MC
                    POLAND                                   CD
                  PORTUGAL                                   UNK
                   SLOVENIA


                      SPAIN


                    SWEDEN


                SWITZERLAND


                UK_ENGLAND


        UK_NORTHERN_IRELAND


               UK_SCOTLAND


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




                  EU Overall

      UK and Northern Ireland

            Southern Europe                                         MC
                                                                    CD
             Eastern Europe                                         UNK

              Central Europe

             Northern Europe

                                0%   20%   40%   60%   80%   100%
      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
                                             Data Quality
                                              ill-defined sites

Numerador                                                                            Numerator
Overlapping lesion of other and unspecified parts of mouth and Mouth,NOS                6.8-6.9
Hypopharynx,NOS                                                                          13.9
Pharynx,NOS and Overlapping lesion of lip, oral cavity and pharynx                     14.0-14.8


Overlapping lesion of rectum, anus and anal canal                                        21.8
Intestinal tract, NOS and Gastrointestinal tract, NOS                                  26.0-26.9
Overlapping lesion of heart, mediastinum, and pleura                                     38.8
Upper respiratory tract, NOS-ILL-defined withing respiratory system                    39.0-39.9


Uterus, NOS                                                                              55.9
Overlapping lesion of female genital organs- Female genital tract, NOS                 57.8-57.9
Overlapping lesion of male genital organs- Male genital tract, NOS                     63.8-63.9
Overlapping lesion of urinary organs-Urinary system, NOS                               68.8-68.9


Overlapping lesion of brain and central nervous system-Nervous system, NOS             72.8-72.9
Overlapping lesion of endocrine glands and related structures-Endocrine gland, NOS     75.8-75.9
Head, face or neck, NOS- Overlapping lesion of ill-defined sites                       76.0-76.8
Unknown primary site                                                                     80.9
                                         Data Quality
ill-defined sites. Number of incident cases and percentage by site and
                          Registry. 1995-2002

                                                                                         Site
        Registry           06.8-        14.0-           26.0-     39.0-              57.8- 63.8- 68.8- 72.8- 75.8- 76.0-
                           06.9    13.9 14.8       21.8 26.9 38.8 39.9          55.9 57.9 63.9 68.9 72.9 75.9 76.8                       80.9 Total
 Austria                    183    753     157      52      207   3       1     470         91        10   256     70    11     623    11.126
 Belgium
 Flemish                    154    118     126      12      68    7       2     237         33         4     79     8     4     364     6.125
 France
 Bas Rhin                     6     24     41        1       5    0       0          8          1      0      2     3     0      9       365
 Calvados                     1      5      5        0       0    2       0          5          1      0      1     0     0     11       144
 Calvados Digestive           0      0      0        9       9    0       0          0          0      0      0     0     0      0        31
 Cote d’Or Digestive          0      0      0        0       8    0       0          0          0      0      0     0     0      0         0
 Cote d’Or Hematopoietic      0      0      0        0       2    0       0          0          0      0      0     0     0      7         2


                                                                                     Site
        Registry           06.8-       14.0-              26.0-     39.0-                     57.8- 63.8- 68.8- 72.8- 75.8- 76.0-
                           06.9   13.9 14.8          21.8 26.9 38.8 39.9                 55.9 57.9 63.9 68.9 72.9 75.9 76.8 80.9
                            6,20 71,44 2,20          0,37 0,27 0,42 0,00                 3,80 0,43 25,64 1,03 1,45 0,25 0,20 3,65
 Austria
 Belgium
 Flemish                    8,82 28,16      3,33     0,19     0,22 0,89       0,01       4,27       0,37   0,02   0,82   0,37   0,39    0,25 4,23
 France
 Bas Rhin                   1,78 10,17      4,75     0,21     0,16 0,00       0,00       1,62       0,12   0,00   0,19   1,58   0,00    0,07 2,78
                            0,51 4,00       0,93     0,00     0,00 4,88       0,00       1,90       0,23   0,00   0,19   0,00   0,00    0,19 2,53
 Calvados
                            0,00    0,00    0,00     1,91     0,33 0,00       0,00       0,00       0,00   0,00   0,00   0,00   0,00    0,00 1,11
 Calvados Digestive
                            0,00    0,00    0,00     0,00     0,18 0,00       0,00       0,00       0,00   0,00   0,00   0,00   0,00    0,00 0,00
 Cote d’Or Digestive
                            0,00    0,00    0,00     0,00     2,60 0,00       0,00       0,00       0,00   0,00   0,00   0,00   0,00    0,37 0,11
 Cote d’Or Hematopoietic
Data Quality WP6
Morphology NOS
Data Quality
              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?
      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
   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
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.
  Comparing data from
Population-based Cancer
Registries: Art or Science?
 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
       Considerations
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
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

				
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