Finding the right treatments for hepatitis C

Hepatitis C is a blood-borne virus that causes scarring and inflammation of the liver. The longer patients are infected, the more likely they are to suffer potentially life-threatening damage to the liver.

Despite extraordinary progress in how HCV is treated - including anti-viral drugs capable of destroying the virus – vast numbers of people still develop serious liver disease, causing 400,000 deaths globally every year.

HCV Research UK was established to address critical gaps in our understanding of HCV. Now one of the largest HCV research cohorts in the world, it has provided vital information about the longer-term impact of the virus to researchers, patients, the NHS, and the pharmaceutical industry.

Thanks to gifts in Wills from Effie Millar Munro and Alfred Tartellin, we were able to provide £2million of funding for the pioneering initiative, set up by a group of clinicians and scientists from across the UK, led by Professor John McLauchlan at the Medical Research Council (MRC) University of Glasgow Centre for Virus Research and Professor Will Irving of the University of Nottingham.

Data from 12,000 patients

Having obtained clinical data from 12,000 patients and assembled a repository of 150,000 samples, the clinical research database and biobank has underpinned more than 65 research studies in the UK, Europe and Australia.

John describes HCV Research UK as “a bigger success than we could ever have imagined.”

"Looking back, we envisioned a national resource which would allow researchers to ask a whole range of unanswered questions about HCV. To look at patterns of transmission in the UK, or examine genetic differences between groups of people, you can’t just rely on isolated laboratory studies. Clinical information from vast numbers of people is required, and that’s what HCV Research UK has offered the research community. It has been a unique opportunity to ask the most pertinent and challenging questions, powered by integrated biological, epidemiological and clinical data, at a national level,” says John.

Life-saving treatments

By a stroke of good fortune, HCV Research UK began its patient recruitment just ahead of new treatments being tested in the clinic.

These drugs are called direct-acting antivirals and transformed the landscape for treating HCV infection. They offered potentially very high success rates for curing infection, shorter length of treatment and few side effects. Each of these issues were problematic for previous treatments, that used weekly injections of a drug called interferon.

Following a decision by NHS England to make these new treatments available through an early access programme to very ill HCV patients – on the condition that their data and samples were provided to HCV Research UK – clinicians could now access invaluable insights into the performance of these new therapies in the real world and outside the confines of a clinical trial.

Data from the resource has underpinned many active research studies, including the MRC’s £5.2 million STOP-HCV programme, which has helped researchers and clinicians better understand disease progression, and improve treatments for patients.

HCV Research UK has also contributed data to 22 research publications, including a Journal of Heptology study which presented some of the first evidence that antiviral treatment was of value to patients with advanced liver disease.

Through their own analyses of the cohort, John and his colleagues have revealed important trends, including higher than average levels of alcohol use, drug use and mental health issues.

“Epidemiological studies to disentangle the impact on health of chronic infection itself, versus these co-existing conditions is of real value, as is the development of interventions to tackle these issues,” says John.

Amplifying patient voices

The Foundation’s support has also laid the groundwork for greater involvement of public and patient groups in hepatitis research, including collaborations with the Hepatitis C Trust, Hepatitis Scotland and the Terrence Higgins Trust. These contributions have helped to explain why taking part in research is so important, in order to answer questions which will have a real impact on the daily lives of patients.

Making a difference

“We are immensely proud of what the HCV consortium has achieved, in memory of Effie Millar Munro and Alfred Tartellin. Thanks to their donations and the Foundation’s transformative investment in our work, we’ve been able to make a real difference to people living with HCV. It is extremely satisfying to think our work could have such a tangible and far-reaching impact on people’s lives.

“Although we’ve stopped recruiting patients, the data collected over the years will always be available to researchers and clinicians. This will ensure that the impact of HCV Research UK is felt for many years to come."