The Danish National Chronic Lymphocytic Leukemia Registry.
OBJECTIVE
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.


METHODS
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.


METHODS
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.
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.


CONCLUSIONS
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.
Department of Internal Medicine, Roskilde Hospital, Roskilde, Denmark.
Caspar
C
da Cunha-Bang
Department of Hematology, Rigshospitalet, Copenhagen University Hospital, Copenhagen, Denmark.
Christian Hartmann
CH
Geisler
Department of Hematology, Herlev Hospital, Herlev, Denmark.
Lisbeth
L
Enggaard
Department of Hematology, Roskilde Hospital, Roskilde, Denmark.
Christian Bjørn
CB
Poulsen
Department of Hematology, Rigshospitalet, Copenhagen University Hospital, Copenhagen, Denmark.
Peter
P
de Nully Brown
Department of Hematology, Odense University Hospital, Odense, Denmark.
Henrik
H
Frederiksen
Department of Hematology, Vejle Hospital, Vejle, Denmark.
Olav Jonas
OJ
Bergmann
Department of Hematology, Aarhus University Hospital, Aarhus, Denmark.
Elisa Jacobsen
EJ
Pulczynski
Department of Hematology, Holstebro Hospital, Holstebro, Denmark.
Robert Schou
RS
Pedersen
Department of Hematology, Esbjerg Hospital, Esbjerg, Denmark.
Linda Højberg
LH
Nielsen
Department of Hematology, Aalborg University Hospital, Aalborg, Denmark.
Ilse
I
Christiansen
Department of Hematology, Rigshospitalet, Copenhagen University Hospital, Copenhagen, Denmark.
Carsten Utoft
CU
Niemann
CLL; comorbidity; epidemiology; population based; survival; targeted treatment