当前位置： SCI文献检索 > Clinical Epidemiology期刊下所有文献 > The Danish National Chronic Lymphocytic Leukemia Registry.

The Danish National Chronic Lymphocytic Leukemia Registry.

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.

journal_name

Clin Epidemiol

journal_title

Clinical epidemiology

authors

da Cunha-Bang C,Geisler CH,Enggaard L,Poulsen CB,de Nully Brown P,Frederiksen H,Bergmann OJ,Pulczynski EJ,Pedersen RS,Nielsen LH,Christiansen I,Niemann CU

doi

10.2147/CLEP.S99486

subject

Has Abstract

pub_date

2016-10-25 00:00:00

pages

561-565

issn

1179-1349

pii

clep-8-561

journal_volume

pub_type

杂志文章,评审

在线工具

The Danish National Chronic Lymphocytic Leukemia Registry.