The Danish National Acute Leukemia Registry

Lene Sofie Granfeldt Østgård, Jan Maxwell Nørgaard, Klas Kræsten Raaschou-Jensen, Robert Schou Pedersen, Dorthe Rønnov-Jessen, Per Troellund Pedersen, Inge Høgh Dufva, Claus Werenberg Marcher, Ove Juul Nielsen, Marianne Tang Severinsen, Lone Smidstrup Friis

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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.

Original languageEnglish
JournalClinical Epidemiology
Volume8
Pages (from-to)553-560
ISSN1179-1349
DOIs
Publication statusPublished - 2016

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Registries
Leukemia
Precursor Cell Lymphoblastic Leukemia-Lymphoma
Acute Myeloid Leukemia
Information Storage and Retrieval
Denmark
Epidemiology
Research

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Østgård, L. S. G., Nørgaard, J. M., Raaschou-Jensen, K. K., Pedersen, R. S., Rønnov-Jessen, D., Pedersen, P. T., ... Friis, L. S. (2016). The Danish National Acute Leukemia Registry. Clinical Epidemiology, 8, 553-560. https://doi.org/10.2147/CLEP.S99460
Østgård, Lene Sofie Granfeldt ; Nørgaard, Jan Maxwell ; Raaschou-Jensen, Klas Kræsten ; Pedersen, Robert Schou ; Rønnov-Jessen, Dorthe ; Pedersen, Per Troellund ; Dufva, Inge Høgh ; Marcher, Claus Werenberg ; Nielsen, Ove Juul ; Severinsen, Marianne Tang ; Friis, Lone Smidstrup. / The Danish National Acute Leukemia Registry. In: Clinical Epidemiology. 2016 ; Vol. 8. pp. 553-560.
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title = "The Danish National Acute Leukemia Registry",
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.",
author = "{\O}stg{\aa}rd, {Lene Sofie Granfeldt} and N{\o}rgaard, {Jan Maxwell} and Raaschou-Jensen, {Klas Kr{\ae}sten} and Pedersen, {Robert Schou} and Dorthe R{\o}nnov-Jessen and Pedersen, {Per Troellund} and Dufva, {Inge H{\o}gh} and Marcher, {Claus Werenberg} and Nielsen, {Ove Juul} and Severinsen, {Marianne Tang} and Friis, {Lone Smidstrup}",
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Østgård, LSG, Nørgaard, JM, Raaschou-Jensen, KK, Pedersen, RS, Rønnov-Jessen, D, Pedersen, PT, Dufva, IH, Marcher, CW, Nielsen, OJ, Severinsen, MT & Friis, LS 2016, 'The Danish National Acute Leukemia Registry', Clinical Epidemiology, vol. 8, pp. 553-560. https://doi.org/10.2147/CLEP.S99460

The Danish National Acute Leukemia Registry. / Østgård, Lene Sofie Granfeldt; Nørgaard, Jan Maxwell; Raaschou-Jensen, Klas Kræsten; Pedersen, Robert Schou; Rønnov-Jessen, Dorthe; Pedersen, Per Troellund; Dufva, Inge Høgh; Marcher, Claus Werenberg; Nielsen, Ove Juul; Severinsen, Marianne Tang; Friis, Lone Smidstrup.

In: Clinical Epidemiology, Vol. 8, 2016, p. 553-560.

Research output: Contribution to journalReviewResearchpeer-review

TY - JOUR

T1 - The Danish National Acute Leukemia Registry

AU - Østgård, Lene Sofie Granfeldt

AU - Nørgaard, Jan Maxwell

AU - Raaschou-Jensen, Klas Kræsten

AU - Pedersen, Robert Schou

AU - Rønnov-Jessen, Dorthe

AU - Pedersen, Per Troellund

AU - Dufva, Inge Høgh

AU - Marcher, Claus Werenberg

AU - Nielsen, Ove Juul

AU - Severinsen, Marianne Tang

AU - Friis, Lone Smidstrup

PY - 2016

Y1 - 2016

N2 - 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.

AB - 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.

U2 - 10.2147/CLEP.S99460

DO - 10.2147/CLEP.S99460

M3 - Review

VL - 8

SP - 553

EP - 560

JO - Clinical Epidemiology

JF - Clinical Epidemiology

SN - 1179-1349

ER -

Østgård LSG, Nørgaard JM, Raaschou-Jensen KK, Pedersen RS, Rønnov-Jessen D, Pedersen PT et al. The Danish National Acute Leukemia Registry. Clinical Epidemiology. 2016;8:553-560. https://doi.org/10.2147/CLEP.S99460