The Danish National Chronic Lymphocytic Leukemia Registry

Caspar da Cunha-Bang; Christian Hartmann Geisler; Lisbeth Enggaard; Christian Bjørn Poulsen; Peter de Nully Brown; Henrik Frederiksen; Olav Jonas Bergmann; Elisa Jacobsen Pulczynski; Robert Schou Pedersen; Linda Højberg Nielsen; Ilse Christiansen; Carsten Utoft Niemann

doi:10.2147/CLEP.S99486

The Danish National Chronic Lymphocytic Leukemia Registry

Caspar da Cunha-Bang, Christian Hartmann Geisler, Lisbeth Enggaard, Christian Bjørn Poulsen, Peter de Nully Brown, Henrik Frederiksen, Olav Jonas Bergmann, Elisa Jacobsen Pulczynski, Robert Schou Pedersen, Linda Højberg Nielsen, Ilse Christiansen, Carsten Utoft Niemann

Department of Clinical Medicine

18 Citations (Scopus)

Abstract

AIM: In 2008, the Danish National Chronic Lymphocytic Leukemia Registry was founded within the Danish National Hematology Database. The primary aim of the registry is to assure quality of diagnosis and care of patients with chronic lymphocytic leukemia (CLL) in Denmark. Secondarily, to evaluate adherence to national guidelines and to provide source data for research purposes.

STUDY POPULATION: All patients diagnosed with CLL in Denmark from 2008 onward are included in the registry. Patients are followed in one of nine hematology centers. All centers participate in the registry and are all obliged to collect data.

MAIN VARIABLES: Predefined data are collected at the time of diagnosis, and follow-up at the time of significant events: treatment, progression, transplantation, and death. Parameters included in the International Workshop on Chronic Lymphocytic Leukaemia criteria for diagnosis, and for decision on treatment initiation as well as characteristics included in the CLL International Prognostic Index are collected.

DESCRIPTIVE DATA: To ensure full coverage of Danish CLL patients in the registry, both continuous queries in case of missing data, and cross-referencing with the Danish National Patient Registry are performed. Data from the registry are published in an annual report summarizing the collected data, the overall survival for yearly cohorts, and the degree of data coverage. Per year approximately 450 new patients with CLL are registered in the registry, cumulative as of July 1, 2015, 3,082 patients have been registered.

CONCLUSION: The Danish National CLL Registry is based within the Danish National Hematology Database. The registry covers a cohort of all patients diagnosed with CLL in Denmark since 2008. It forms the basis for quality assessment of CLL treatment in Denmark and offers a unique opportunity for population-based research.

Original language	English
Journal	Clinical Epidemiology
Volume	8
Pages (from-to)	561-565
Number of pages	5
ISSN	1179-1349
DOIs	https://doi.org/10.2147/CLEP.S99486
Publication status	Published - 25 Oct 2016

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Review
Journal Article

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title = "The Danish National Chronic Lymphocytic Leukemia Registry",

abstract = "AIM: In 2008, the Danish National Chronic Lymphocytic Leukemia Registry was founded within the Danish National Hematology Database. The primary aim of the registry is to assure quality of diagnosis and care of patients with chronic lymphocytic leukemia (CLL) in Denmark. Secondarily, to evaluate adherence to national guidelines and to provide source data for research purposes.STUDY POPULATION: All patients diagnosed with CLL in Denmark from 2008 onward are included in the registry. Patients are followed in one of nine hematology centers. All centers participate in the registry and are all obliged to collect data.MAIN VARIABLES: Predefined data are collected at the time of diagnosis, and follow-up at the time of significant events: treatment, progression, transplantation, and death. Parameters included in the International Workshop on Chronic Lymphocytic Leukaemia criteria for diagnosis, and for decision on treatment initiation as well as characteristics included in the CLL International Prognostic Index are collected.DESCRIPTIVE DATA: To ensure full coverage of Danish CLL patients in the registry, both continuous queries in case of missing data, and cross-referencing with the Danish National Patient Registry are performed. Data from the registry are published in an annual report summarizing the collected data, the overall survival for yearly cohorts, and the degree of data coverage. Per year approximately 450 new patients with CLL are registered in the registry, cumulative as of July 1, 2015, 3,082 patients have been registered.CONCLUSION: The Danish National CLL Registry is based within the Danish National Hematology Database. The registry covers a cohort of all patients diagnosed with CLL in Denmark since 2008. It forms the basis for quality assessment of CLL treatment in Denmark and offers a unique opportunity for population-based research.",

keywords = "Review, Journal Article",

author = "{da Cunha-Bang}, Caspar and Geisler, {Christian Hartmann} and Lisbeth Enggaard and Poulsen, {Christian Bj{\o}rn} and {de Nully Brown}, Peter and Henrik Frederiksen and Bergmann, {Olav Jonas} and Pulczynski, {Elisa Jacobsen} and Pedersen, {Robert Schou} and Nielsen, {Linda H{\o}jberg} and Ilse Christiansen and Niemann, {Carsten Utoft}",

year = "2016",

month = oct,

day = "25",

doi = "10.2147/CLEP.S99486",

language = "English",

volume = "8",

pages = "561--565",

journal = "Clinical Epidemiology",

issn = "1179-1349",

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T1 - The Danish National Chronic Lymphocytic Leukemia Registry

AU - da Cunha-Bang, Caspar

AU - Geisler, Christian Hartmann

AU - Enggaard, Lisbeth

AU - Poulsen, Christian Bjørn

AU - de Nully Brown, Peter

AU - Frederiksen, Henrik

AU - Bergmann, Olav Jonas

AU - Pulczynski, Elisa Jacobsen

AU - Pedersen, Robert Schou

AU - Nielsen, Linda Højberg

AU - Christiansen, Ilse

AU - Niemann, Carsten Utoft

PY - 2016/10/25

Y1 - 2016/10/25

N2 - AIM: In 2008, the Danish National Chronic Lymphocytic Leukemia Registry was founded within the Danish National Hematology Database. The primary aim of the registry is to assure quality of diagnosis and care of patients with chronic lymphocytic leukemia (CLL) in Denmark. Secondarily, to evaluate adherence to national guidelines and to provide source data for research purposes.STUDY POPULATION: All patients diagnosed with CLL in Denmark from 2008 onward are included in the registry. Patients are followed in one of nine hematology centers. All centers participate in the registry and are all obliged to collect data.MAIN VARIABLES: Predefined data are collected at the time of diagnosis, and follow-up at the time of significant events: treatment, progression, transplantation, and death. Parameters included in the International Workshop on Chronic Lymphocytic Leukaemia criteria for diagnosis, and for decision on treatment initiation as well as characteristics included in the CLL International Prognostic Index are collected.DESCRIPTIVE DATA: To ensure full coverage of Danish CLL patients in the registry, both continuous queries in case of missing data, and cross-referencing with the Danish National Patient Registry are performed. Data from the registry are published in an annual report summarizing the collected data, the overall survival for yearly cohorts, and the degree of data coverage. Per year approximately 450 new patients with CLL are registered in the registry, cumulative as of July 1, 2015, 3,082 patients have been registered.CONCLUSION: The Danish National CLL Registry is based within the Danish National Hematology Database. The registry covers a cohort of all patients diagnosed with CLL in Denmark since 2008. It forms the basis for quality assessment of CLL treatment in Denmark and offers a unique opportunity for population-based research.

AB - AIM: In 2008, the Danish National Chronic Lymphocytic Leukemia Registry was founded within the Danish National Hematology Database. The primary aim of the registry is to assure quality of diagnosis and care of patients with chronic lymphocytic leukemia (CLL) in Denmark. Secondarily, to evaluate adherence to national guidelines and to provide source data for research purposes.STUDY POPULATION: All patients diagnosed with CLL in Denmark from 2008 onward are included in the registry. Patients are followed in one of nine hematology centers. All centers participate in the registry and are all obliged to collect data.MAIN VARIABLES: Predefined data are collected at the time of diagnosis, and follow-up at the time of significant events: treatment, progression, transplantation, and death. Parameters included in the International Workshop on Chronic Lymphocytic Leukaemia criteria for diagnosis, and for decision on treatment initiation as well as characteristics included in the CLL International Prognostic Index are collected.DESCRIPTIVE DATA: To ensure full coverage of Danish CLL patients in the registry, both continuous queries in case of missing data, and cross-referencing with the Danish National Patient Registry are performed. Data from the registry are published in an annual report summarizing the collected data, the overall survival for yearly cohorts, and the degree of data coverage. Per year approximately 450 new patients with CLL are registered in the registry, cumulative as of July 1, 2015, 3,082 patients have been registered.CONCLUSION: The Danish National CLL Registry is based within the Danish National Hematology Database. The registry covers a cohort of all patients diagnosed with CLL in Denmark since 2008. It forms the basis for quality assessment of CLL treatment in Denmark and offers a unique opportunity for population-based research.

KW - Review

KW - Journal Article

U2 - 10.2147/CLEP.S99486

DO - 10.2147/CLEP.S99486

M3 - Review

C2 - 27822100

SN - 1179-1349

VL - 8

SP - 561

EP - 565

JO - Clinical Epidemiology

JF - Clinical Epidemiology

ER -

The Danish National Chronic Lymphocytic Leukemia Registry

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