The Danish National Acute Leukemia Registry.
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).


METHODS
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%.
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.


CONCLUSIONS
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.
Department of Hematology; Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus.
Lene Sofie Granfeldt
LS
Østgård
Department of Hematology.
Jan Maxwell
JM
Nørgaard
Department of Hematology, Copenhagen University Hospital, Roskilde.
Klas Kræsten
KK
Raaschou-Jensen
Department of Medicine, Holstebro Hospital, Holstebro.
Robert Schou
RS
Pedersen
Department of Hematology, Vejle Hospital, Vejle.
Dorthe
D
Rønnov-Jessen
Department of Medicine, Esbjerg Hospital, Esbjerg.
Per Troellund
PT
Pedersen
Department of Hematology, Copenhagen University Hospital, Herlev.
Inge Høgh
IH
Dufva
Department of Hematology, Odense University Hospital, Odense.
Claus Werenberg
CW
Marcher
Department of Hematology, The National University Hospital, Rigshospitalet, Copenhagen.
Ove Juul
OJ
Nielsen
Department of Hematology, Aalborg University Hospital, Aalborg, Denmark; Department of Clinical Medicine, Aalborg University, Aalborg, Denmark.
Marianne Tang
MT
Severinsen
Department of Hematology, The National University Hospital, Rigshospitalet, Copenhagen.
Lone Smidstrup
LS
Friis
acute lymphoblastic leukemia; acute myeloid leukemia; data quality; myelodysplastic syndrome; population-based; registries