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

Jacke, Christian; Kalder, M.; Wagner, Uwe; Albert, Ute‐Susann

doi:10.1186/1756-0500-5-700

Cited by 18 publications

(13 citation statements)

References 25 publications

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“…The method of adaptive monitoring was previously published by Jacke et al on a breast cancer query database from two 1-year episodes (1996/1997, 2003/2004) 11,12 . In total, 877 cases were included in the study.…”

Section: Discussionmentioning

confidence: 99%

Validating a transnational fracture treatment registry using a standardized method

Frese

Gode

Heinrichs

et al. 2019

Preprint

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Aim Subsequent to a three-month pilot phase, recruiting patients for the newly established BFCC (Baltic Fracture Competence Centre) transnational fracture registry, a validation of the data quality needed to be carried out, applying a standardized method.Method During the literature research, the method of “adaptive monitoring” fulfilled the requirements of the registry and was applied. It consisted of a three-step audit process; firstly, scoring of the overall data quality, followed by source data verification of a sample size, relative to the scoring result, and finally, feedback to the registry on measures to improve data quality. Statistical methods for scoring of data quality and visualisation of discrepancies between registry data and source data were developed and applied.Results Initially, the data quality of the registry scored as medium. During source data verification, missing items in the registry, causing medium data quality, turned out to be absent in the source as well. A subsequent adaptation of the score evaluated the registry’s data quality as good. It was suggested to add variables to some items in order to improve the accuracy of the registry.Discussion The application of the method of adaptive monitoring has only been published by Jacke et al., with a similar improvement of the scoring result following the audit process. Displaying data from the registry in graphs helped to find missing items and discover issues with data formats. Graphically comparing the degree of agreement between the registry and source data allowed to discover systematic faults.Conclusions The method of adaptive monitoring gives a substantiated guideline for systematically evaluating and monitoring a registry’s data quality and is currently second to none. The resulting transparency of the registry’s data quality could be helpful in annual reports, as published by most major registries. As the method has been rarely applied, further successive applications in established registries would be desirable.

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Section: Discussionmentioning

confidence: 99%

Validating a transnational fracture treatment registry using a standardized method

Frese

Gode

Heinrichs

et al. 2019

Preprint

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“…Several studies have highlighted the inadequacies of changing data collection methods and the bias this can create when analysing cancer registry data [7,11,[13][14][15][30][31][32]. Improved diagnostic tests have allowed the identification of multifocal disease in more than one quadrant of the breast that may have been previously missed.…”

Section: Data Collection Methods and Issuesmentioning

confidence: 99%

“…Changes in accuracy of data over time and differing definitions have been shown to have an influence on cancer intelligence and must be taken into consideration throughout this study [7,8,11,[13][14][15].…”

Section: Introductionmentioning

confidence: 99%

Comparison of quadrant-specific breast cancer incidence trends in the United States and England between 1975 and 2013

Bright

Rea

Francis

et al. 2016

Cancer Epidemiology

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Background: UK breast cancer incidence rates suggest that upper outer quadrant (UOQ) cancers have risen disproportionately compared with other areas over time. We aimed to provide a comparison of the trend in quadrant-specific breast cancer incidence between the United States (US) and England, and determine whether a disproportionate UOQ increase is present.Methods: Surveillance Epidemiology and End Result (SEER) cancer registry data were obtained on 630,007 female breast cancers from 1975-2013. English cancer registry data were obtained on 1,121,134 female breast cancers from 1979-2013. Temporal incidence changes were analysed using negative binomial regression.Interaction terms determined whether incidence changes were similar between sites.Results: English breast cancer incidence in the UOQ rose significantly from 13% to 28% from 1979 to 2013 whereas no significant increase was observed among SEER data. The significant interaction between quadrant and year of diagnosis (p<0.001) in both SEER and English data indicates that breast cancer incidence in each quadrant changed at a different rate. Incidence in the UOQ rose disproportionately compared to the nipple (SEER IRR=0.81, p<0.001; England IRR=0.78, p<0.001) and axillary tail (SEER IRR=0.87, p=0.018; England IRR=0.69, p<0.001) in both SEER and England. In addition, incidence rose disproportionately in the UOQ compared to non-site specific tumours in England (Overlapping lesions IRR=0.81, p=0.002; NOS IRR=0.78, p<0.001). The proportion of non-site specific tumours was substantially higher in England than SEER throughout the study period (62% in England; 39% in SEER). Conclusions:Breast cancer incidence in the UOQ increased disproportionately compared to non-site specific tumours in England but not in SEER, likely due to the decrease in non-site specific tumours observed in England over time. There may be real differences in incidence between the two countries, possibly due to differences in aetiology, but is much more likely to be an artefact of changing data collection methods and improvements in site coding in either country.

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“…So bietet es sich an, qualitätssichernde Maßnahmen -wie einen Originaldatenabgleich -in denjenigen Studienzentren einzusetzen, die in den Indikatoren Auffälligkeiten zeigen [7]. …”

Section: Definition Of Registries · Registry Quality · Registry Reseaunclassified

Was Register leisten können und was nicht

Neugebauer

Stausberg

2016

Unfallchirurg

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In addition to clinical trials, registries and cohort studies are the fundamental basis of patient-orientated research. The importance of registries is increasing because more questions involving patient care under routine conditions (real world data) need to be answered. This article supplies answers to the questions: what can be achieved with registries and what are the limitations? Starting with a consensus definition of a registry from the German Network of Health Services Research (DNVF), the question of existing registries was examined and it was concluded that there was a lack of transparency. Consequently, a registry of registries similar to clinical trials registries is urgently needed as well as an evaluation of the quality of existing registries. Criteria are deduced that allow an assessment of the quality of a registry and which comprehensive possibilities registries can provide are discussed in eight different areas of interest to clinicians. The limitations of registries compared to randomized clinical trials and cohort studies are emphasized and discussed in this article. In the future, the use of registry-based randomized clinical trials (RRCT) will allow data related to efficacy as well as to effectiveness to be collated.

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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

Cited by 18 publications

References 25 publications

Validating a transnational fracture treatment registry using a standardized method

Validating a transnational fracture treatment registry using a standardized method

Comparison of quadrant-specific breast cancer incidence trends in the United States and England between 1975 and 2013

Was Register leisten können und was nicht

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