National HCV Database - One Year On

The official launch of HCV Research UK was on 21st January 2013 at the University of Glasgow.

The event was well attended by around 60 delegates, including representatives from Department of Health, government, industry as well as leading clinicians/academics . There were 12 speakers who covered a broad set of topics ranging from the patient’s perspective and the national picture to recent developments in HCV research.

HCV Research UK Launch, Randolph Hall, University of Glasgow

In the first 12 months, the centres have recruited over 3000 patients into the study, close to a third of the way to the target of 10,000* and apart from a dip across the Christmas period, the cohort is growing at approximately 100 new patients /week. The number of centres across the UK has also grown, from the original 18 to almost 40. To date the system has scaled up nicely to accommodate the additional load, with no loss of performance evident.

Lab results from the centres’ LIMS are beginning to be routinely imported into the clinical database and have done some more work around validation and standardisation of units.

Almost 10,000 blood samples have been sent to the Biobank in Glasgow. Blood samples collected at the centres are bar-coded and shipped by a specialist courier each night. The barcodes are scanned into the clinical database and notification of these is sent to the Biobank database running on servers in Dundee via an interface developed jointly between Dundee University and Illuminaries. This interface has to span the N3 firewall behind which the clinical database sits to reach the Biobank database server on www. Biobank staff are then made aware of and can track all blood samples from collection to delivery and following aliquoting, to storage in the Biobank freezers.

With what is starting to be a statistically significant dataset, Illuminaries has been designing some data cubes using SQL Server Analysis Services, to allow researchers easy and rapid access, using Excel, to identify patients satisfying a range of criteria. For example, an early request was to identify all patients with genotype 3 HCV, who had failed previous treatment and had cirrhosis. The cubes will reside on a virtual server being set up at the University of Nottingham and will be refreshed from the live clinical database on a monthly basis.

As a result of the success of the first year’s running of the national HCV clinical database, Illuminaries has received enquiries from three other groups for similar systems : to provide clinical case management functionality, a system to support a study of Primary Biliary Cirrhosis (PBC) and a pan-European initiative for stem cell research.

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