title: The HCV National Register: towards informing the natural history of hepatitis C infection in the UK.
abstract: 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.
authors: Immunization Division, Communicable Disease Surveillance Centre, London, UK. hharris@phls.nhs.uk
authors: H E
authors: HE
authors: Harris
authors: M E
authors: ME
authors: Ramsay
authors: J
authors: J
authors: Heptonstall
authors: K
authors: K
authors: Soldan
authors: K P
authors: KP
authors: Eldridge
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D002648:Child; D002675:Child, Preschool; D003625:Data Collection; D005260:Female; D016174:Hepacivirus; D006526:Hepatitis C / Q000453:epidemiology; D006801:Humans; D007223:Infant; D008297:Male; D012042:Registries / Q000706:statistics & numerical data*; D065227:Transfusion Reaction; D006113:United Kingdom / Q000453:epidemiology