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The Danish National Acute Leukemia Registry

Authors Østgård LSG, Nørgaard JM, Raaschou-Jensen KK, Pedersen RS, Rønnov-Jessen D, Pedersen PT, Dufva IH, Marcher CW, Nielsen OJ, Severinsen MT, Friis LS

Received 9 November 2015

Accepted for publication 26 January 2016

Published 25 October 2016 Volume 2016:8 Pages 553—560


Checked for plagiarism Yes

Review by Single anonymous peer review

Peer reviewer comments 4

Editor who approved publication: Professor Henrik Toft Sørensen

Lene Sofie Granfeldt Østgård,1,2 Jan Maxwell Nørgaard,1 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,10,11 Lone Smidstrup Friis9

1Department of Hematology, 2Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, 3Department of Hematology, Copenhagen University Hospital, Roskilde, 4Department of Medicine, Holstebro Hospital, Holstebro, 5Department of Hematology, Vejle Hospital, Vejle, 6Department of Medicine, Esbjerg Hospital, Esbjerg, 7Department of Hematology, Copenhagen University Hospital, Herlev, 8Department of Hematology, Odense University Hospital, Odense, 9Department of Hematology, The National University Hospital, Rigshospitalet, Copenhagen, 10Department of Hematology, Aalborg University Hospital, Aalborg, Denmark, 11Department of Clinical Medicine, Aalborg University, Aalborg, Denmark

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: data quality, registries, population-based, acute myeloid leukemia, acute lymphoblastic leukemia, myelodysplastic syndrome

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