SteatoSITE - An integrated gene-to-patient data commons for NAFLD research

"We are doing research to improve the health of people who get a kind of chronic liver disease called Non-alcoholic fatty liver disease (NAFLD). Patients who develop NAFLD may go on to develop more serious form of liver disease called non-alcoholic steatohepatitis (NASH), which can result in liver fibrosis and liver cancer. Ultimately these patients may need a liver transplant. It is very difficult to diagnose this disease as the vast majority of liver disease is found when the disease is at later stages because it does not cause symptoms before this point. The only reliable diagnostic method is biopsy where liver tissue is obtained by inserting a needle into the patient, and the tissue is then assessed under a microscope. Liver biopsy has serious limitations: it can be painful and there is a risk of serious complications. Despite this disease becoming more common, there are no approved drugs as a treatment for NASH and there is no way to determine which patients will develop the more serious form of the disease. In medicine and research, a huge amount of data is now available. This data is often scattered in many different locations. Even within the NHS, it exists is in many different forms and locations. Data can be in the form of information about genes and genetics, medical records, information from tests or prescription data or imaging data from scans or x-rays. If we want to include information from researchers or from drug companies working on this disease, it becomes even more complicated. Our project will bring all these different forms of data together in one place which should make the task of being able to diagnose and treat this disease much easier.

We have assembled a multi-disciplinary team consisting of clinicians, data scientists, pathologists, computer scientists and drug companies to work together to determine what information they would need in order to be able to find new treatments for this disease, what we need to do to be able to tell if treatments are working, how we can diagnose this disease. When treatments become available, we should be also to determine which patients will go on to develop the more serious form of the disease."