HCV Research UK: Providing a resource for HCV researchers globally

HCV Research UK, led by researchers at the Universities of Glasgow and Nottingham and backed by the Medical Research Foundation, was established in 2012 with the aim of improving our understanding of hepatitis C virus (HCV).

HCV is a bloodborne virus that infects and damages the cells of the liver, causing scarring and inflammation that can lead to the development of cirrhosis, liver failure, and liver cancer if left untreated. Despite extraordinary progress in how HCV is diagnosed and treated, it is still a massive cause of morbidity and mortality, affecting 71-million people globally and causing 400,000 deaths a year.

 

TACKLING THE BIG QUESTIONS

HCV Research UK was established to address critical gaps in our understanding of HCV and the diseases it causes. It involved the creation of a research cohort, a group of 12,000 people living with HCV from whom researchers could  collect vital clinical samples and information about risk factors that may influence the outcome of their infection. Thus, HCV Research UK has been essential in establishing a resource that has allowed researchers to understand the long-term impact of HCV to patients and the health and research services supporting them.

The project, led by Professor John McLauchlan of the Medical Research Council (MRC)-University of Glasgow Centre for Virus Research and Professor Will Irving of the University of Nottingham, has provided clinical data and/or samples for over 65 research studies across the UK, Europe, North America 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.

 

A LASTING RESOURCE

Since enrolment of the first patient in 2012, the network of clinical centres involved in recruiting patients into HCV Research UK grew from 18 sites across Great Britain to 60. Patients were recruited at routine hospital visits where their clinical data could be entered into a centralised database. At the same time, blood samples were taken for storage in a biorepository. For each participant, HCV Research UK has collected epidemiological data including socio-demographic factors (gender, age, ethnicity), data on how they acquired HCV (route of infection and year of infection), health risk behaviours, information about their viral infection (what its genetic code looks like), and any other health conditions or medications. Using this information, HCV Research UK has provided a rich database for researchers to investigate what factors contribute to HCV infection, disease progression, and what medications may be most effective to treat the virus.

HCV Research UK has received and processed 47,000 samples over the last 11 years, with about 40% already used for scientific research. The remainder of the samples are still available for any new studies. While HCV Research UK is no longer recruiting participants, its database remains available for researchers looking for access to clinical data and samples.

 

“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.”

 

IMPROVING TREATMENTS FOR HCV

The most effective treatment for HCV infections are drugs called direct acting antivirals (DAAs). Compared with old treatments, DAAs offer high success rates, shorter lengths of treatment, and fewer side effects. HCV Research UK worked with the NHS to offer these treatments to people living with HCV as part of an NHS England Expanded Access Programme (EAP). The purpose of this programme was to offer those with severe disease the opportunity to have  early access to these improved medications before they were formally approved by NICE (National Institute for Health and Care Excellence, the regulatory body governing use of treatments in England). HCV Research UK collected data and samples from people undergoing these treatments, allowing both the NHS and clinicians to access invaluable information on the performance of these new therapies in the real world, outside the confines of a clinical trial.

Another major initiative to emerge from HCV Research UK was the STOP-HCV consortium (http://www.stop-hcv.ox.ac.uk/home), which aimed to use epidemiological, clinical, and genetic information from HCV Research UK participants to work out the most effective treatment options for people living with HCV. A further study set up by STOP-HCV, called the STOP-HCV Cirrhosis Study, which aimed to investigate factors responsible for progression to liver disease or cirrhosis, used the HCV Research UK network and infrastructure to gather clinical data and samples.

 

STRENGTHENING PATIENT VOICES IN HCV RESEARCH

HCV Research UK also laid the foundations for improved public and patient involvement in virus research. Ongoing collaborations between the MRC-University of Glasgow Centre for Virus Research and the Hepatitis C Trust, Hepatitis Scotland and Terrence Higgins Trust, are aimed at improving engagement with people living with bloodborne viruses. These initiatives have helped to educate those affected by bloodborne viruses on the work that goes on in research laboratories to understand the impact of science on alleviating the diseases that they develop because of long-term infection. Conversely, it has aided researchers to appreciate the value of their work and focus on the aspects of infection that really impact the day-to-day lives of those living with HCV and other bloodborne viruses.

“Engaging with those faced with living with hepatitis C has always been a critical part of HCV Research UK’s activities. Our aim has been to help people understand how we can make best use of the clinical data and samples that they donate to improve our knowledge of the virus, how it causes disease and the best way to cure infection. Therefore, individuals living with the virus sit at the heart of what we have been aiming to do. Without them, the research that has been carried out would not have been possible. Our hope is that we have helped to demystify the science that goes on in the background, which they are not aware of.”

 

Find out more about our recent public engagement project in partnership with the Terrence Higgins Trust, Unseen Hands, here: https://cvr-engagement.co.uk/unseen-hands 

 

A LASTING LEGACY

“This project was founded out of a desire to set up a resource that would provide opportunities for the research community to have ready access to data and samples to tackle the problems we face with HCV infection in the UK,” says John.

“When we started, there were growing numbers of people year on year in the UK who developed serious liver disease and liver cancer as a result of carrying the virus. Consequently, deaths also were on the rise. With the new drugs that are available to cure infection after only a relatively short course of treatment, we are now seeing considerable reductions in liver disease and mortality. The clinical network and resources provided by HCV Research UK played an important role in the first stages of gathering information about whether these drugs were of value to those who needed them urgently. The research made possible by the consortium has had an impact on reducing the number of people living with hepatitis C in the UK and their likelihood of developing life-threatening liver diseases. At the same time, there is still much work to be done before hepatitis C will be eradicated. So, although we are no longer recruiting patients, the data collected over the years is still available to researchers and clinicians. This will ensure that the impact of HCV Research UK is tangible for many years to come.

I have no doubt we have fulfilled the legacy of the benefactors who generously donated their money to the Medical Research Foundation and from whom we undoubtedly benefited.

 

For more information on how HCV Research UK may be able to provide data and samples for your research, please visit this website: https://directory.biobankinguk.org/Profile/Biobank/GBR-1-18 

For more information on the research that HCV Research UK has contributed, please see this paper from the consortium: https://academic.oup.com/ije/article/46/5/1391/3056757