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.

Keywords:

• data quality
• registries
• population-based
• acute myeloid leukemia
• acute lymphoblastic leukemia
• myelodysplastic syndrome

Acknowledgments

We wish to thank all hematologists who carefully report clinical data to the registry. Also, we appreciate the dedicated work of Secretary Kirsten Hansen, Aarhus University Hospital, and of the data coordinator, Dr Peter Brown, Copenhagen University Hospital. This paper was funded by the Program for Clinical Research Infrastructure (PROCRIN) established by the Lundbeck Foundation and the Novo Nordisk Foundation and administered by the Danish Regions.

Disclosure

The registry is administered by the Registry Support Centre of Epidemiology and Biostatistics (East) and the Registry Support Centre of Clinical Quality and Health Informatics (East). Lene Sofie Granfeldt Østgård is supported by the Danish Cancer Society. The other authors report no conflicts of interest in this work.