Data quality in the Danish National Acute Leukemia Registry: a hematological data resource

Abstract

BackgroundThe Danish National Acute Leukemia Registry (DNLR) has documented coverage of above 98.5%. Less is known about the quality of the recorded data.ObjectiveTo describe the present coverage of the DNLR, its completeness, and accuracy of individual variables for acute myeloid leukemia (AML). Furthermore, as a second measure of true coverage of the DNLR, to estimate AML incidence in Denmark from DNLR data and compare it to incidence reported from other AML registries.Patients and methodsBy the end of December 2011, the DNLR (established January 2000) included detailed data on a large, well-defined, and nonselected Danish population of 2,665 AML patients. We estimated positive predictive values (PPVs) and completeness for 30 variables, which included patient and disease characteristics, treatment, and treatment outcomes. We identified 260 AML patients (10% of all AML patients recorded in the DNLR). We used information from medical records as the gold standard.ResultsUsing the Danish National Registry of Patients as a reference, the coverage of the DNLR was 99.6%. The PPVs of the individual variables ranged from 89.4% to 100%. The completeness of individual variables varied between 60.7% and 100%. Stratification by time of registration in the DNLR (before 2006 versus 2006 and later) revealed higher PPVs and lower frequencies of missing data from 2006. Sex-adjusted incidence rates were 6.2/100,000 person-years (95% confidence interval 5.8–6.6) in males and 4.9/100,000 person-years (95% confidence interval 4.5–5.4) in females. Yearly incidence rates of AML were higher than the incidence rates reported from Sweden (4.5 and 4.2/100,000) and the US (4.5 and 3.1/100,000 in Caucasians).ConclusionWith few exceptions, there were high values for PPVs and completeness of recorded data. Data accuracy and completeness have improved since the registry was established. The estimated incidence may indicate that the DNLR truly is more complete than other registries. In conclusion, the DNLR is a valuable resource for clinical research of AML.

Clinical outcomes of splenectomy in children: Report of the splenectomy in congenital hemolytic anemia registry

“…Second, optimal registry design using standardized data is critical to maximize data quality. Our missing data rate is similar to other large observational registries [29, 30]. Although the use of a protocol with required tests would minimize missing data, we caution against mandating these practices for an observational pediatric registry, as this may decrease the rate of enrollment [31].…”

The Danish National Acute Leukemia Registry

“…We recently performed a validation study of the quality of AML registrations in the DNLR 8. In that study, the coverage of the DNLR was found to be 99.6% (95% confidence interval [CI] 99.3–99.8) with the DNRP used as a reference.…”

“… Note: Adapted with permission of Dove Medical Press Ltd., from Data quality in the Danish National Acute Leukemia Registry: a hematological data resource, Østgård L, Nørgaard J, Severinsen M, et al, Clin Epidemiol , 2013;5:335–344,8 Copyright © 2009; permission conveyed through Copyright Clearance Center, Inc. Abbreviations: AML, acute myeloid leukemia; ALL, acute lymphoblastic leukemia; CPR, civil registration number; ICD, International Classification of Diseases; FISH, fluorescence in situ hybridization; WHO, World Health Organization; WHO PS, World Health Organization performance status score; Y, yes; N, no; FAB, French-American-British.…”

“… Note: Adapted with permission of Dove Medical Press Ltd., from Data quality in the Danish National Acute Leukemia Registry: a hematological data resource, Østgård L, Nørgaard J, Severinsen M, et al, Clin Epidemiol , 2013;5:335–344,8 Copyright © 2009; permission conveyed through Copyright Clearance Center, Inc.…”

Clinical and epidemiological characteristics of acute myeloid leukemias in adults according to the data of municipal hematology departments in Moscow

“…[3], но ниже, чем в странах Европы и США (3,4-5,4/100 тыс.) [1][2]13]. Если принять во внимание, что данные в нашем исследовании собраны ретроспек-тивно и ограничивались муниципальными медицински-ми учреждениями, то очевидно, что реальная заболевае-мость по Москве выше 2,9/100 тыс.…”