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Help us find a breakthrough in PSC research

Mission 2030

Mission 2030 is an ambitious challenge and we can’t do it alone. We need your help to find the breakthrough people with PSC so desperately need.

It’s time we found effective treatments for PSC

Play your part in leaving no stone unturned

Mission 2030: help us find the breakthrough we need

PSC Support is committed to establishing a pathway towards finding a cure or effective treatment for everyone with PSC by 2030, and will leave no stone unturned in this mission. We invest in research that seeks to overcome the barriers that are slowing down progress and works towards finding the breakthrough that people with PSC so desperately need.

We are proud members of the Association of Medical Research Charities. All research that we fund is reviewed by our Scientific Review Committee and goes through a robust process to ensure that precious donations are spent only on the best PSC research.

Your donations are already funding important work to understand the causes of PSC, to understand how PSC affects quality of life, to identify biomarkers to diagnose PSC, to measure its progression, to help detect bile duct cancer early, and ultimately, to find effective treatment for PSC.

However, we must do more to accelerate this progress.

By 2030, we will fund and support more PSC research than ever before, offering over £1 million in grants to researchers to:

  • fund PSC studies aligned with our Research Strategy, turning researchers’ ideas into reality;
  • fund 3 year PhD clinical fellowships in PSC to help develop the careers of future PSC specialists and to fill the critical gaps in our knowledge about PSC; and
  • support them to set up larger studies and clinical trials.

There is an URGENT need to develop effective treatments for everyone with PSC

Primary sclerosing cholangitis (PSC) is a rare disease that affects the bile ducts and liver. Bile ducts are small tubes that drain bile out of the liver and into the bowel.

People with PSC have a faulty immune system that mistakenly attacks the body, and over time, the bile ducts and liver become scarred. PSC can affect anyone at any age, including during childhood.

The last black box in hepatology

Even though PSC was first described over 150 years ago in 1867, there is still no treatment to slow or stop the disease worsening or to reduce the risk of complications. Indeed, Professor Michael Manns, a leading PSC expert, named PSC ‘the last black box in hepatology’, and with good reason.

Despite major advances in our understanding of the disease in the last decade, there is still much to learn. We still do not fully understand why someone gets PSC, how to treat it, how to truly measure worsening disease, how to predict who will get worse and how soon, and importantly, who will not. People with PSC are at risk of getting some cancers, including bile duct cancer. We don’t yet have the science or tools to detect it early and this is further complicated by the fact that PSC mimics aspects of bile duct cancer making it even more challenging to pick up.


‘In about 10 weeks I had gone from my normal life to waiting to hear whether I was able to go on the liver transplant list. The operation that had sat in the back of my mind in the “Please, no” category now appeared to be the great lifesaving gift.’ James

The greatest unmet need in modern liver medicine

PSC research is challenging and there are a number of barriers (see ‘Barriers to Treatments’) that stand in our way to finding effective PSC treatments as fast as possible. Even as recently as February 2023, Dr Palak Trivedi (University of Birmingham) stated that “Primary sclerosing cholangitis represents the greatest unmet need in liver medicine.” Despite this, the research landscape for PSC is flourishing and there are now more clinical trials (research studies) testing potential treatments than ever before.

PSC Research Today

Palak Trivedi for PSC Support 300by Dr Palak Trivedi (Consultant hepatologist at the Queen Elizabeth Hospital, Birmingham, Chair of the BASL Immune Special Interest Group, and Chief Investigator for UK-PSC). 21 March 2023

We must accelerate research progress

The good news is that there is a great deal of PSC research going on! The bad news is that we need to do more, faster.

Because of the complex and unpredictable nature of PSC, living with it can feel uncertain and unknown. People with PSC do not have the luxury of time to wait for treatments and there are multiple barriers slowing down PSC research. We must address these barriers if we are to accelerate research progress and find the breakthrough that people with PSC so desperately need.

PSC Support is the only UK charity dedicated to funding research and improving the lives of people living with PSC. We are determined to help find effective treatments for everyone with PSC by 2030. We will do this by breaking down the barriers that are hampering research and funding more research than ever before.

Mission 2030: Help us fund £1m in research grants

Watch the tree bloom with hope and fill with colour as we fund more PSC research.

Total Mission 2030 research funded so far is £155,000 thanks to your donations.

Barriers to research progress

PSC is rare

A well-designed clinical trial that tests a new drug needs enough people to take part in it to show that results didn’t happen by chance; that they really were a consequence of taking the drug.

If a clinical trial cannot recruit enough people to take part, there is a risk that the trial will stop and never generate any meaningful data about the drug. This is a very real risk in PSC because it is such a rare disease and the eligibility criteria are strict, meaning only some people are suitable to go on trials.

People with PSC are engaged and interested in research, and want to take part. However, not everyone is cared for in a hospital that conducts PSC research. For proactive patients, it is possible to take part in trials that are not conducted at their usual hospital but many miss out on these opportunities because they are cared for in a hospital that isn’t running clinical trials for PSC.


 "PSC already takes so much away from us. Usually we are having to react to changing symptoms or worsening of the condition, but by signing up for a clinical trial, we are taking back some of that control."

Gareth, clinical trial participant

It should be easy for people who are eligible and want to take part in trials to do so. PSC Support works with researchers and pharmaceutical companies to develop trial protocols that are as patient-friendly as possible. We provide clear information about the clinical trials so that people with PSC can ask their medical team about taking part. Our booklet, called : ‘Finding Treatments for PSC: Your Guide to Clinical Trials’, explains what is involved and what to expect.

Everybody with PSC should be considered for a PSC clinical trial, regardless of where they live.

PSC management is a challenge

Diagnosis of PSC

There is no single diagnostic blood test for PSC. This means that doctors need to piece together clues from our medical history, blood tests, symptoms and scans to make a diagnosis. To diagnose small duct PSC, a liver biopsy is required. A liver biopsy is an invasive procedure that takes very small samples of liver tissue for investigation (about 1/50,000th of the liver). The lack of a single diagnostic blood test means there is sometimes uncertainty about a PSC diagnosis, especially in those with milder disease resulting in significant delays (sometimes years) in confirming the diagnosis. This causes increased stress and anxiety for those affected and vital monitoring for cancers and complications can be missed.

There is a desperate need to develop a blood test for people with PSC to help improve the diagnosis of this condition more rapidly and with a greater degree of certainty.

PSC Support funds research to develop such a blood test.

Dr Goode and Dr Rushbrook - diagnostic blood test

Dr Rushbrook - validating the diagnostic blood test


Detecting bile duct cancer

A safe, highly sensitive tool for the early detection of bile duct cancer is lacking in PSC, yet bile duct cancer must be picked up early for the best chance of available treatments working.

There is an urgent need to develop a simple blood test to help detect bile duct cancer early.

PSC Support funds research to develop blood biomarkers associated with the development of bile duct cancer. The findings now need to be validated in a larger group of people (a ‘validation phase’) so that strong evidence can be developed to show that these new blood biomarkers do indeed predict the groups of patients who will develop CCA or rPSC (and equally, who will not develop rPSC).

Dr Bañales - early detection of bile duct cancer

Dr Guest - biomarkers in PSC/ biliary duct cancer

Professor Boulter - non-canonical wnt signalling

Dr Jarman - how bile duct cancer develops in PSC

Professor Jesús Bañales and Dr Pedro Rodrigues - blood test to predict and detect bile duct cancer


Measuring worsening disease

The course of PSC varies from one person to the next. For some people, PSC can get much worse in a matter of months, and for others, it can be several decades. This makes a difference when testing the effect of new drugs in research. Running a trial for decades to assess how well a drug has worked is not feasible. The trial would become too expensive and importantly for patients, it would take too long to get the results.

This means that researchers need reliable methods that don’t take decades to measure how PSC is progressing, and equally, measure if that progression has slowed, stopped or reversed because of a drug. In research, these tools are called surrogate biomarkers: they are things that can be measured (such as a blood test or scan) to help predict how a person’s disease is likely to evolve in the future.

To date we don’t yet have a convincing single surrogate biomarker that can do this for PSC. Researchers testing potential new drugs currently rely on a combination of biomarkers to make an educated guess about the long term impact of the drugs.

Convincing surrogate biomarkers that can be used to inform eligibility to participate in trials, assess potential treatments for PSC and confirm the safety profile of new or repurposed compounds are critically needed. They would simplify research and help accelerate the development of treatments - something people with PSC desperately need.

PSC Support funds research to identify biomarkers in several studies including the VAPoR Study:

Dr Trivedi - the VAPoR Study

UK-PSC - long term health and causes of PSC

The UK-PSC registry was set up in 2009 as a UK-PSC genetics study with PSC Support funding, and is now one of the largest PSC registries in the world, with details of over 2,000 people with PSC from the UK. Today, the registry collects biological samples as well as medical histories. Data from the registry has been used in important international research looking at the natural history of PSC, risk factors that could lead to worsening disease, understanding the genetics studies and the development of biomarkers that could one day change the face of research and every day care.

Funded by PSC Support: Dr Goode’s study to identify the true genes underlying each of the twenty-three known regions of the genome associated with risk of developing PSC. These genes are potential candidates for future therapeutic targets to treat PSC.

Dr Goode - T-cell gene expression

There is a disconnect between routine test results and how people with PSC feel and function

There is an urgent need to develop a patient-focused, PSC-specific quality of life measure for use in routine clinical care and in clinical trials. The impact of PSC on quality of life should not be underestimated and is an important factor considered by regulatory bodies when licensing and paying for new medicines.

Similarly, the financial burden of PSC on individuals and on national health services is not fully understood.

We must be prepared and ready with robust economic health and quality of life data when the first effective treatments for PSC are found so that PSC Support can advocate for these medicines to be made available to as many people with PSC as possible, as soon as possible.

A good quality of life matters. PSC Support is developing the first truly patient-centric quality of life measure specifically for PSC and we encourage health economic research for PSC.

PSC quality of life measure

Pilot data is critical

Because PSC is a disease that is complex and not fully understood, researchers need funding to explore new avenues that might lead to treatments. It is difficult to get such studies off the ground without pilot data to show they have potential. However, those studies are important. In modern medicine, especially in the autoimmune disease field, some new medicines and breakthroughs have come out of left field.

We must leave no stone unturned in our search for treatments for PSC. We must help researchers generate pilot data that might lead to bigger studies - one of them might be the breakthrough we’re all looking for.

Having preliminary data to demonstrate a research project is promising is just one of the barriers to securing funding for larger studies. A high-quality study must be well-designed, and where possible, be a collaboration between a number of hospitals/ universities. Preparing a winning funding bid for a large research study is a huge undertaking. We must support our PSC researchers in preparing these bids so they can present the best case possible to secure the funds for larger PSC studies.

Dr Ilott - how the liver and the intestine interact in PSC

Mission 2030 is an ambitious challenge and we can’t do it alone. We need your help to find the breakthrough people with PSC so desperately need.

It’s time we found effective treatments for PSC

Play your part in leaving no stone unturned

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Mission 2030 - Help us fund £1 million of research by 2030

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