The Danish National Acute Leukemia Registry

Abstract

Aim of databaseThe 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 populationThe 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 dataApproximately, 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.ConclusionThe 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.

Impact of Allogeneic Stem Cell Transplantation in First Complete Remission in Acute Myeloid Leukemia: A National Population-Based Cohort Study

“…We conducted a population-based nationwide cohort study of 3486 patients with AML age ≥15 years registered in the DNLR between 2000 and 2014 [13]. The registry collects clinical data prospectively and covers 99.6% of all patients with AML diagnosed in Denmark.…”

“…The registry collects clinical data prospectively and covers 99.6% of all patients with AML diagnosed in Denmark. Danish citizens (5.7 million people) are entitled to free access to medical care provided by the public tax-supported health care system, and no cancer treatment is provided outside of these public centers [13,14]. During the study period, patients with AML were treated with intensive therapy at 5 centers, and all HSCTs were performed at 2 centers: Aarhus University Hospital and Rigshospitalet.…”

Autoimmune diseases, infections, use of antibiotics and the risk of acute myeloid leukaemia: a national population‐based case‐control study

“…We excluded 125 patients with promyelocytic leukaemia from the study cohort due to the different pathogenesis. Cases and their date of diagnosis were identified through the Danish National Acute Leukaemia Registry (DNLR) (Østgård et al , ).…”

Longitudinal trajectory patterns of plasma albumin and C-reactive protein levels around diagnosis, relapse, bacteraemia, and death of acute myeloid leukaemia patients

“…The Danish National Acute Leukemia Registry comprises patients with AML from January 2000, with prospectively recorded clinical and patientrelated variables [31]. The AML diagnosis was verified when patients were registered in the database and were based on WHO-defined criteria of blast percentage in bone marrow or blood as well as specific cytogenetic and molecular aberrations [32,33].…”