title: Valid comparisons and decisions based on clinical registers and population based cohort studies: assessing the accuracy, completeness and epidemiological relevance of a breast cancer query database.
abstract: BACKGROUND
  Data accuracy and completeness are crucial for ensuring both the correctness and epidemiological relevance of a given data set. In this study we evaluated a clinical register in the administrative district of Marburg-Biedenkopf, Germany, for these criteria.
  
  
  METHODS
  The register contained data gathered from a comprehensive integrated breast-cancer network from three hospitals that treated all included incident cases of malignant breast cancer in two distinct time periods from 1996-97 (N=389) and 2003-04 (N=488). To assess the accuracy of this data, we compared distributions of risk, prognostic, and predictive factors with distributions from established secondary databases to detect any deviations from these "true" population parameters. To evaluate data completeness, we calculated epidemiological standard measures as well as incidence-mortality-ratios (IMRs).
  
  
  RESULTS
  In total, 12% (13 of 109) of the variables exhibited inaccuracies: 9% (5 out of 56) in 1996-97 and 15% (8 out of 53) in 2003-04. In contrast to raw, unstandardized incidence rates, (in-) directly age-standardized incidence rates showed no systematic deviations. Our final completeness estimates were IMR=36% (1996-97) and IMR=43% (2003-04).
  
  
  CONCLUSIONS
  Overall, the register contained accurate, complete, and correct data. Regional differences accounted for detected inaccuracies. Demographic shifts occurred. Age-standardized measures indicate an acceptable degree of completeness. The IMR method of measuring completeness was inappropriate for incidence-based data registers. For the rising number of population-based health-care networks, further methodological advancements are necessary. Correct and epidemiologically relevant data are crucial for clinical and health-policy decision-making.
authors.affiliation: Mental Health Services Research Group, Central Institute of Mental Health, Medical Faculty Mannheim / Heidelberg University, Mannheim, Germany. christian.jacke@zi-mannheim.de
authors.forename: Christian Olaf
authors.initials: CO
authors.lastname: Jacke
authors.forename: Mathias
authors.initials: M
authors.lastname: Kalder
authors.forename: Uwe
authors.initials: U
authors.lastname: Wagner
authors.forename: Ute-Susann
authors.initials: US
authors.lastname: Albert
mesh_terms: D000328:Adult; D017677:Age Distribution; D000367:Age Factors; D000368:Aged; D001943:Breast Neoplasms / Q000453:epidemiology* / Q000401:mortality / Q000473:pathology / Q000628:therapy; D015331:Cohort Studies; D016208:Databases, Factual / Q000592:standards; D005260:Female; D005858:Germany / Q000453:epidemiology; D006761:Hospitals; D006801:Humans; D015994:Incidence; D008875:Middle Aged; D011379:Prognosis; D011786:Quality Control; D012042:Registries / Q000592:standards; D015203:Reproducibility of Results; D012307:Risk Factors; D013997:Time Factors