A charity that supports people affected by a rare liver disease has awarded a series of research grants to students working to find a cure.
PSC Support works to improve the lives of people affected by primary sclerosing cholangitis (PSC), an immune-mediated liver disease that can affect anyone, at any age.
The Oxfordshire-based charity, which was set up in 1995, recently awarded three grants, worth a combined total of £75,000, to researchers investigating the disease in the UK and Spain.
PSC is a complex, incurable immune-mediated liver and bile duct disease, which can develop rapidly and unpredictably, and also confers a higher risk of some cancers than in the general population. One of these aggressive cancers - bile duct cancer - is difficult to detect and is often diagnosed too late to be treated effectively.
The cause of PSC is not yet fully understood, but current evidence suggests that people with a particular genetic makeup may be susceptible to some sort of (as yet unknown) environmental trigger, which causes their immune system to effectively “attack” the bile ducts.
The first research project will allow researchers in Spain to develop a non-invasive blood test which may be able to diagnose bile duct cancer in PSC patients early.
The second, called PSC600, awarded to Dr Trivedi from the University of Birmingham, is an ambitious project involving 600 PSC patients from a number of UK hospitals who will be closely monitored over five years to help identify biological markers associated with disease progression.
The charity enlisted the services of leading Midlands law firm Wright Hassall LLP to help publish information relating to the grants on its website, as well as share it with the AMRC (Association of Medical Research Charities).
The Leamington-based law firm helped the charity to comply with the General Data Protection Regulation (GDPR) for the publication of this information.
Martine Walmsley, PSC Support’s Chair of Trustees, said: “PSC is known as the last black box in hepatology. It is a complicated and debilitating disease, and research is vital if we are to find a cure.
“While there are no effective medical treatments available for PSC today, research is flourishing and we have every confidence an effective treatment will come.
“It is therefore very important to us that we are able to share information about our research grants in order to raise awareness of our grant programme, and equally, that researchers are clear about how we are using and processing their data.”
Martine added: “Wright Hassall’s attention to detail in taking time to familiarise themselves with what we do enabled them to identify our needs and help us properly communicate how we process personal data within our research programme and we can’t thank them enough.”
Lucy Baskott a solicitor and Claire Halle-Smith a senior associate at Wright Hassall, both specialising in data protection and the drafting and negotiation of commercial contracts within Wright Hassall’s Commercial Team, were pleased that the firm was able to assist PSC Support.
Lucy said: “We were delighted to be able to provide PSC Support with a solid platform from which they can continue to carry out their important work.”