title: Completeness and timeliness: Cancer registries could/should improve their performance.
abstract: Cancer registries must provide complete and reliable incidence information with the shortest possible delay for use in studies such as comparability, clustering, cancer in the elderly and adequacy of cancer surveillance. Methods of varying complexity are available to registries for monitoring completeness and timeliness. We wished to know which methods are currently in use among cancer registries, and to compare the results of our findings to those of a survey carried out in 2006.
  
  
  METHODS
  In the framework of the EUROCOURSE project, and to prepare cancer registries for participation in the ERA-net scheme, we launched a survey on the methods used to assess completeness, and also on the timeliness and methods of dissemination of results by registries. We sent the questionnaire to all general registries (GCRs) and specialised registries (SCRs) active in Europe and within the European Network of Cancer Registries (ENCR).
  
  
  RESULTS
  With a response rate of 66% among GCRs and 59% among SCRs, we obtained data for analysis from 116 registries with a population coverage of ∼280 million. The most common methods used were comparison of trends (79%) and mortality/incidence ratios (more than 60%). More complex methods were used less commonly: capture-recapture by 30%, flow method by 18% and death certificate notification (DCN) methods with the Ajiki formula by 9%. The median latency for completion of ascertainment of incidence was 18 months. Additional time required for dissemination was of the order of 3-6 months, depending on the method: print or electronic. One fifth (21%) did not publish results for their own registry but only as a contribution to larger national or international data repositories and publications; this introduced a further delay in the availability of data.
  
  
  CONCLUSIONS
  Cancer registries should improve the practice of measuring their completeness regularly and should move from traditional to more quantitative methods. This could also have implications in the timeliness of data publication.
authors.affiliation: Piedmont Cancer Registry, CPO, Via San Francesco da Paola 31, 10123 Turin, Italy. Electronic address: roberto.zanetti@cpo.it.
authors.forename: R
authors.initials: R
authors.lastname: Zanetti
authors.affiliation: Institute of Medical Biostatistics, Epidemiology and Informatics (IMBEI), Division Medical Biometry, University Medical Center of the Johannes Gutenberg, University Mainz, Langenbeckstr. 1, D 55131 Mainz, Germany.
authors.forename: I
authors.initials: I
authors.lastname: Schmidtmann
authors.affiliation: Piedmont Cancer Registry, CPO, Via San Francesco da Paola 31, 10123 Turin, Italy.
authors.forename: L
authors.initials: L
authors.lastname: Sacchetto
authors.affiliation: Registre des Cancers du Bas-Rhin, 11 rue Humann, 67085 Strasbourg Cedex, France.
authors.forename: F
authors.initials: F
authors.lastname: Binder-Foucard
authors.affiliation: Ticino Cancer Registry, Istituto cantonale di patologia, Via Selva 24, 6601 Locarno, Switzerland.
authors.forename: A
authors.initials: A
authors.lastname: Bordoni
authors.affiliation: Cluj Regional Cancer Registry, Dept. of Epidemiology & Medical Biostatistics, Oncological Institute 'Ion Chiricuta', Republicii Street No. 34-36, 400015 Cluj Napoca, Romania.
authors.forename: D
authors.initials: D
authors.lastname: Coza
authors.affiliation: Ferrara Cancer Registry, Via Fossato di Mortara 64B, 44121 Ferrara, Italy.
authors.forename: S
authors.initials: S
authors.lastname: Ferretti
authors.affiliation: Tarragona Cancer Registry, Foundation Society for Cancer Research and Prevention, IISPV, C/Josep Laporte, 1, 43204 Reus, Spain.
authors.forename: J
authors.initials: J
authors.lastname: Galceran
authors.affiliation: Northern Ireland Cancer Registry, Dept. of Epidemiology & Public Health, Queen's University Inst. of Clinical Science, Mulhouse Bldg, Grosvenor Road, BT12 6BJ Belfast, Northern Ireland, UK.
authors.forename: A
authors.initials: A
authors.lastname: Gavin
authors.affiliation: Basque Cancer Registry, Servicio de Registros e Informacion Sanitaria, Departamento de Salud del Gobierno Vasco, 01010 Donostia-San Sebastian 1, 01010 Vitoria-Gasteiz, Spain.
authors.forename: N
authors.initials: N
authors.lastname: Larranaga
authors.affiliation: Thames Cancer Registry, King's College London, Cancer Epidemiology and Population Health, 1st Floor, Capital House, 42 Weston Street, SE1 3QD London, UK.
authors.forename: D
authors.initials: D
authors.lastname: Robinson
authors.affiliation: Icelandic Cancer Registry, Icelandic Cancer Society, P.O. Box 5420, Skógarhlíd 8, 125 Reykjavik, Iceland.
authors.forename: L
authors.initials: L
authors.lastname: Tryggvadottir
authors.affiliation: Belgian Cancer Registry, Koningstraat 215, 1210 Brussels, Belgium.
authors.forename: E
authors.initials: E
authors.lastname: Van Eycken
authors.affiliation: Cancer Registry of Republic of Slovenia, Institute of Oncology Ljubljana, Zaloska cesta 2, 1000 Ljubljana, Slovenia.
authors.forename: V
authors.initials: V
authors.lastname: Zadnik
authors.affiliation: IKZ Integraal Kankercentrum Zuid, P.O. Box 231, 5600 AE Eindhoven, The Netherlands.
authors.forename: J W W
authors.initials: JW
authors.lastname: Coebergh
authors.affiliation: Piedmont Cancer Registry, CPO, Via San Francesco da Paola 31, 10123 Turin, Italy.
authors.forename: S
authors.initials: S
authors.lastname: Rosso
mesh_terms: D002423:Cause of Death; D003625:Data Collection; D003644:Death Certificates; D005060:Europe / Q000453:epidemiology; D006801:Humans; D015994:Incidence; D033181:Information Dissemination; D009369:Neoplasms / Q000453:epidemiology*; D011159:Population Surveillance / Q000379:methods; D058996:Quality Improvement; D012042:Registries / Q000592:standards* / Q000706:statistics & numerical data; D013997:Time Factors
keywords: Cancer registry; Completeness; Flow methods; Timeliness