TY - JOUR

T1 - Completeness and validity in a national clinical thyroid cancer database

T2 - DATHYRCA

AU - Londero, Stefano Christian

AU - Mathiesen, Jes Sloth

AU - Krogdahl, Annelise

AU - Bastholt, Lars

AU - Overgaard, Jens

AU - Bentsen, Jens

AU - Hahn, Christoffer Holst

AU - Schytte, Sten

AU - Pedersen, Henrik Baymler

AU - Christiansen, Peer

AU - Godballe, Christian

AU - study from the Danish Thyroid Cancer Group

N1 - Copyright © 2014 Elsevier Ltd. All rights reserved.

PY - 2014/10

Y1 - 2014/10

N2 - BACKGROUND: Although a prospective national clinical thyroid cancer database (DATHYRCA) has been active in Denmark since January 1, 1996, no assessment of data quality has been performed. The purpose of the study was to evaluate completeness and data validity in the Danish national clinical thyroid cancer database: DATHYRCA.STUDY DESIGN AND SETTING: National prospective cohort. Denmark; population 5.5 million. Completeness of case ascertainment was estimated by the independent case ascertainment method using three governmental registries as a reference. The reabstracted record method was used to appraise the validity. For validity assessment 100 cases were randomly selected from the DATHYRCA database; medical records were used as a reference.RESULT: The database held 1934 cases of thyroid carcinoma and completeness of case ascertainment was estimated to 90.9%. Completeness of registration was around or above 90% in most instances. Perfect agreement on the diagnosis of thyroid carcinoma was found, both inter- and intra-observer, and κ values of selected variables showed overall good to excellent agreement.CONCLUSION: In a setup with public health insurance, personal identity numbers and extended governmental databases, it is possible to establish national clinical cancer databases with a satisfactory completeness and validity. The DATHYRCA database is considered reliable in terms of describing thyroid carcinoma at a national level.

AB - BACKGROUND: Although a prospective national clinical thyroid cancer database (DATHYRCA) has been active in Denmark since January 1, 1996, no assessment of data quality has been performed. The purpose of the study was to evaluate completeness and data validity in the Danish national clinical thyroid cancer database: DATHYRCA.STUDY DESIGN AND SETTING: National prospective cohort. Denmark; population 5.5 million. Completeness of case ascertainment was estimated by the independent case ascertainment method using three governmental registries as a reference. The reabstracted record method was used to appraise the validity. For validity assessment 100 cases were randomly selected from the DATHYRCA database; medical records were used as a reference.RESULT: The database held 1934 cases of thyroid carcinoma and completeness of case ascertainment was estimated to 90.9%. Completeness of registration was around or above 90% in most instances. Perfect agreement on the diagnosis of thyroid carcinoma was found, both inter- and intra-observer, and κ values of selected variables showed overall good to excellent agreement.CONCLUSION: In a setup with public health insurance, personal identity numbers and extended governmental databases, it is possible to establish national clinical cancer databases with a satisfactory completeness and validity. The DATHYRCA database is considered reliable in terms of describing thyroid carcinoma at a national level.

U2 - 10.1016/j.canep.2014.07.009

DO - 10.1016/j.canep.2014.07.009

M3 - Journal article

C2 - 25132423

VL - 38

SP - 633

EP - 637

JO - Cancer Epidemiology

JF - Cancer Epidemiology

SN - 1877-7821

IS - 5

ER -