The Danish National Lymphoma Registry: Coverage and Data Quality

The Danish National Lymphoma Register (LYFO) prospectively includes information on all lymphoma patients newly diagnosed at hematology departments in Denmark. The validity of the clinical information in the LYFO has never been systematically assessed. To test the coverage and data quality of the LYF...

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Bibliographic Details
Published in:PloS one 2016-06, Vol.11 (6), p.e0157999-e0157999
Main Authors: Arboe, Bente, El-Galaly, Tarec Christoffer, Clausen, Michael Roost, Munksgaard, Peter Svenssen, Stoltenberg, Danny, Nygaard, Mette Kathrine, Klausen, Tobias Wirenfeldt, Christensen, Jacob Haaber, Gørløv, Jette Sønderskov, Brown, Peter de Nully
Format: Article
Language:English
Subjects:
Analysis
B-cell lymphoma
Biology and Life Sciences
Cancer
Care and treatment
Central nervous system
Classification
Committees
Completeness
Data Accuracy
Denmark - epidemiology
Diagnosis
Disease
Epidemiology
Female
Hematology
Hospitals
Humans
Immunotherapy
Internet
Lymphocytes B
Lymphocytes T
Lymphoma
Lymphoma - epidemiology
Male
Medical diagnosis
Medical records
Medicine and Health Sciences
Non-Hodgkin's lymphomas
Pathology
Patients
People and Places
Population
Population Surveillance
Public health
Quality
Registration
Registries - standards
Registries - statistics & numerical data
Studies
Subgroups
Topography
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Description
Summary:The Danish National Lymphoma Register (LYFO) prospectively includes information on all lymphoma patients newly diagnosed at hematology departments in Denmark. The validity of the clinical information in the LYFO has never been systematically assessed. To test the coverage and data quality of the LYFO. The coverage was tested by merging data of the LYFO with the Danish Cancer Register and the Danish National Patient Register, respectively. The validity of the LYFO was assessed by crosschecking with information from medical records in subgroups of patients. A random sample of 3% (N = 364) was made from all patients in the LYFO. In addition, four subtypes of lymphomas were validated: CNS lymphomas, diffuse large B-cell lymphomas, peripheral T-cell lymphomas, and Hodgkin lymphomas. A total of 1,706 patients from the period 2000-2012 were included. The positive predictive values (PPVs) and completeness of selected variables were calculated for each subgroup and for the entire cohort of patients. The comparison of data from the LYFO with the Danish Cancer Register and the Danish National Patient Register revealed a high coverage. In addition, the data quality was good with high PPVs (87% to 100%), and high completeness (92% to 100%). The LYFO is a unique, nationwide clinical database characterized by high validity, good coverage and prospective data entry. It represents a valuable resource for future lymphoma research.
ISSN:1932-6203
1932-6203
DOI:10.1371/journal.pone.0157999