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Published on: June 16, 2017
The Danish National Chronic Lymphocytic Leukemia Registry
Caspar da Cunha-Bang1, Christian Hartmann Geisler2, Lisbeth Enggaard3
1Department of Internal Medicine, Roskilde Hospital, Roskilde, Denmark.
Insights
The Danish National Chronic Lymphocytic Leukemia Registry ensures quality care for CLL patients in Denmark. This population-based registry supports research and adherence to national treatment guidelines.
Area of Science:
- Hematology
- Oncology
- Public Health
Background:
- The Danish National Chronic Lymphocytic Leukemia (CLL) Registry was established in 2008.
- It operates within the Danish National Hematology Database.
- The registry aims to improve diagnosis and care quality for CLL patients nationwide.
Approach:
- Includes all patients diagnosed with CLL in Denmark from 2008 onwards.
- Collects data at diagnosis and significant events (treatment, progression, death).
- Utilizes continuous data queries and cross-referencing with the Danish National Patient Registry for comprehensive coverage.
Key Points:
- Collects diagnostic criteria, treatment initiation parameters, and prognostic factors.
- Approximately 450 new CLL cases are registered annually.
- As of July 1, 2015, 3,082 patients were registered.
Conclusions:
- The registry provides a comprehensive cohort of Danish CLL patients.
- It facilitates quality assessment of CLL treatment and adherence to guidelines.
- Offers a valuable resource for population-based research in chronic lymphocytic leukemia.
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.
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