Two CCRN-supported hepatology trials
Primary Biliary Cirrhosis (PBC) Genetics and Primary Sclerosing Cholangitis Studies
Hepatology Specialty Group
The PBC Genetics Study is a national effort to establish a PBC DNA collection consisting of DNA samples from approximately 5000 patients with PBC. The study looks for variations in small fragments of DNA between 'healthy controls' and patients. The DNA collection will be used for a genome-wide association study (GWAS) of PBC and future genetic studies. Recruitment started in Cambridge, expanded to include East Anglia and transplant centres, and is now recruiting nationally. Getting the CCRN on board made an enormous difference to getting more participants into the study. We now have a co-ordinator in Cambridge who directs nurses around the country to identify patients and collect data, which he then collates. Recruitment in the fourth year of the study is now running at 60 - 100 patients a month with total recruitment at over 4,000 which (with about 12000 - 15000 patients recruited nationally) is staggering.