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The HCV National Register: towards informing the natural history of hepatitis C infection in the UK [Note 1. This work was funded by the UK Departments of ...]
Author(s) -
Harris H. E.,
Ramsay M. E.,
Heptonstall J.,
Soldan K.,
Eldridge K. P.
Publication year - 2000
Publication title -
journal of viral hepatitis
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.329
H-Index - 100
eISSN - 1365-2893
pISSN - 1352-0504
DOI - 10.1046/j.1365-2893.2000.00255.x
Subject(s) - medicine , hepatitis c , blood transfusion , data quality , natural history , nice , disease , family medicine , computer science , service (business) , economy , economics , programming language
The aim of this paper is to describe the development of a national hepatitis C register and the completeness of the data it contains. This is a descriptive report of the structure and function of the register, including case definitions, registration and follow‐up procedures, and methods used to maximize data quality and to obtain comparative data sources. The register contains data on HCV‐infected individuals who acquired their infections on a known date and by a known route; to date all are transfusion recipients identified during the UK lookback exercise, who tested positive or indeterminate for anti‐HCV after receiving ‘infected’ blood issued before the introduction of routine testing of the blood supply for anti‐HCV. By 31 December 1999, 871 (87%) of 996 eligible transfusion recipients had been registered, and 984 (99%) flagged in the NHS Central Registers. Registered patients had been infected for an average of 11.1 years (SEM 0.1); around half were being cared for by clinicians with a specialist interest in liver disease. Except for the information on tobacco use, current alcohol use, and hepatitis B status, data were more than 80% complete, and for most variables, more than 90% complete. The consistency of data abstraction was found to be 98% (SEM 0.5). In conclusion, the Register contains high quality anonymised data on one of the largest cohorts of individuals with HCV infections acquired on a known date and by a known route. It could serve as a model for other chronic disease registers; developers may find the structure, design, and methodological issues addressed useful.