The Danish National Acute Leukemia Registry

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  • Lene Sofie Granfeldt Østgård
  • Jan Maxwell Nørgaard
  • Klas Kræsten Raaschou-Jensen, Department of Hematology, Copenhagen University Hospital, Roskilde.
  • ,
  • Robert Schou Pedersen
  • ,
  • Dorthe Rønnov-Jessen, Department of Hematology, Vejle Hospital, Vejle.
  • ,
  • Per Troellund Pedersen, Department of Emergency Medicine, Hospital of South West Jutland, Esbjerg.
  • ,
  • Inge Høgh Dufva, Department of Hematology, Copenhagen University Hospital, Herlev.
  • ,
  • Claus Werenberg Marcher, Department of Hematology, Odense University Hospital, Odense.
  • ,
  • Ove Juul Nielsen, Department of Hematology, The National University Hospital, Rigshospitalet, Copenhagen.
  • ,
  • Marianne Tang Severinsen, Department of Hematology, Aalborg University Hospital, Aalborg, Denmark; Department of Clinical Medicine, Aalborg University, Aalborg, Denmark.
  • ,
  • Lone Smidstrup Friis, Department of Hematology, The National University Hospital, Rigshospitalet, Copenhagen.

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.

OriginalsprogEngelsk
TidsskriftClinical epidemiology
Vol/bind8
Sider (fra-til)553-560
Antal sider8
ISSN1179-1349
DOI
StatusUdgivet - 2016

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