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Review
. 2016 Oct 25:8:553-560.
doi: 10.2147/CLEP.S99460. eCollection 2016.

The Danish National Acute Leukemia Registry

Lene Sofie Granfeldt Østgård  1 , Jan Maxwell Nørgaard  2 , Klas Kræsten Raaschou-Jensen  3 , Robert Schou Pedersen  4 , Dorthe Rønnov-Jessen  5 , Per Troellund Pedersen  6 , Inge Høgh Dufva  7 , Claus Werenberg Marcher  8 , Ove Juul Nielsen  9 , Marianne Tang Severinsen  10 , Lone Smidstrup Friis  9
Affiliations
Review

The Danish National Acute Leukemia Registry

Lene Sofie Granfeldt Østgård et al. Clin Epidemiol. .

Abstract

Aim of database: The main aim of the Danish National Acute Leukemia Registry (DNLR) was to obtain information about the epidemiology of the hematologic cancers acute myeloid leukemia (AML), acute lymphoblastic leukemia (ALL), and myelodysplastic syndrome (MDS).

Study population: The registry was established in January 2000 by the Danish Acute Leukemia Group and has been expanded over the years. It includes adult AML patients diagnosed in Denmark since 2000, ALL patients diagnosed since 2005, and MDS patients diagnosed since 2010. The coverage of leukemia patients exceeds 99%, and the coverage of MDS patients is currently 90%.

Main variables and descriptive data: Approximately, 250 AML patients, 25 ALL patients, and 230 MDS patients are registered in the DNLR every year. In January 2015, the registry included detailed patient characteristics, disease characteristics, treatment characteristics, and outcome data on more than 3,500 AML, 300 ALL, and 1,100 MDS patients. Many of the included prognostic variables have been found to be of high quality including positive predictive values and completeness exceeding 90%. These variables have been used in prognostic observational studies in the last few years. To ensure this high coverage, completeness, and quality of data, linkage to the Danish Civil Registration System and the Danish National Registry of Patients, and several programmed data entry checks are used.

Conclusion: The completeness and positive predictive values of the leukemia data have been found to be high. In recent years, the DNLR has shown to be an important high-quality resource for clinical prognostic research.

Keywords: acute lymphoblastic leukemia; acute myeloid leukemia; data quality; myelodysplastic syndrome; population-based; registries.

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Conflict of interest statement

DisclosureThe registry is administered by the Registry Support Centre of Epidemiology and Biostatistics (East) and the Registry Support Centre of Clinical Quality and Health Informatics (East). Lene Sofie Granfeldt Østgård is supported by the Danish Cancer Society. The other authors report no conflicts of interest in this work.

Figures

Figure 1
Figure 1
Survival in Danish AML and ALL patients registered in the Danish National Acute Leukemia Registry. Notes: (A) Survival in AML patients, by age group; (B) survival in AML patients, by functional status (WHO performance status score); (C) survival in ALL patients, by years since diagnosis (n=159); and (D) survival in AML patients (diagnosed between 2005 and 2010), by years since diagnosis (n=2,398). Data from the Annual Leukemia Report, 2010. Abbreviations: AML, acute myeloid leukemia; ALL, acute lymphoblastic leukemia; WHO, World Health Organization.
Figure 1
Figure 1
Survival in Danish AML and ALL patients registered in the Danish National Acute Leukemia Registry. Notes: (A) Survival in AML patients, by age group; (B) survival in AML patients, by functional status (WHO performance status score); (C) survival in ALL patients, by years since diagnosis (n=159); and (D) survival in AML patients (diagnosed between 2005 and 2010), by years since diagnosis (n=2,398). Data from the Annual Leukemia Report, 2010. Abbreviations: AML, acute myeloid leukemia; ALL, acute lymphoblastic leukemia; WHO, World Health Organization.
See this image and copyright information in PMC

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