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Review
. 2016 Oct 25:8:561-565.
doi: 10.2147/CLEP.S99486. eCollection 2016.

The Danish National Chronic Lymphocytic Leukemia Registry

Caspar da Cunha-Bang  1 , Christian Hartmann Geisler  2 , Lisbeth Enggaard  3 , Christian Bjørn Poulsen  4 , Peter de Nully Brown  2 , Henrik Frederiksen  5 , Olav Jonas Bergmann  6 , Elisa Jacobsen Pulczynski  7 , Robert Schou Pedersen  8 , Linda Højberg Nielsen  9 , Ilse Christiansen  10 , Carsten Utoft Niemann  2
Affiliations
Review

The Danish National Chronic Lymphocytic Leukemia Registry

Caspar da Cunha-Bang et al. Clin Epidemiol. .

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: CLL; comorbidity; epidemiology; population based; survival; targeted treatment.

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Conflict of interest statement

Carsten Utoft Niemann is a principal investigator in clinical trials sponsored by Roche (Basel, Switzerland), has received fees for consultancy from Roche, Janssen (NJ, USA), and Gilead (CA, USA), and has received research funding from the Danish Cancer Society. The authors report no other conflicts of interest in this work.

Figures

Figure 1
Figure 1
Data flowchart. Notes: Dataflow in The Danish National CLL Registry. At the time of diagnosis, baseline registration is performed at one of nine centers. Data are validated through cross-referencing with The National Patient Registry (NPR) and The Danish Cancer Registry (DCR). Data describing follow-up variables are continuously registered at the time of significant events. These data form the basis for quality assessment of treatment for patients with CLL in Denmark and offers a unique opportunity for population-based research. Abbreviation: CLL, chronic lymphocytic leukemia.
Figure 2
Figure 2
Research strategy/potential. Notes: The data registered in The Danish National CLL Registry can be used to address research questions at a population-based level through registry-based epidemiological studies, translational research using biobank samples, and by providing easy access to high quality long-term follow-up data for ongoing clinical trials. Abbreviation: CLL, chronic lymphocytic leukemia.
See this image and copyright information in PMC

References

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