Helping demystify multi-organ fibrosis: The DEMISTIFI study

Those living with systemic sclerosis know the effects of fibrosis, which is responsible for thickening of the skin and scarring of the internal organs like the lungs, gastrointestinal tract, heart and blood vessels and the kidneys. Organ fibrosis in systemic sclerosis leads to a range of often debilitating complications and disability which can dramatically impact upon wellbeing.

But did you know that fibrosis also happens with many other medical conditions? Scarring occurs in conditions such as diabetes, liver cirrhosis and kidney failure, and is even thought to be of importance in conditions like strokes, motor neurone disease and multiple sclerosis. And just like in systemic sclerosis, some people may experience more than one of these conditions at the same time, leading to fibrosis and scarring in multiple organs (multi-organ fibrosis).  

The DEMISTIFI (Defining MechanIsms Shared across mulTI-organ Fibrosis to prevent the development of long-term multi-morbidity) study is led by Professor Gisli Jenkins (Imperial College London) and funded by the Medical Research Council. The study bringing together leading scientists to better understand the causes and characteristics of fibrosing diseases. This innovative approach of focussing on multiple medical conditions instead of one alone will allow expertise from many medical conditions to be pooled to better understand the communality and differences between fibrosing conditions. It is hoped that taking such an approach will lead to better treatments and interventions (like specific evidence for and guidance on lifestyle changes) to prevent or treat fibrosing diseases and allow better technologies and avenues for earlier detection as well as monitoring changes associated with fibrosis.   

The research team want to ensure that the voices of those living with fibrosing conditions are included in this important research. SRUK has been invited with along with other patient organisations such as Kidney Research UK, Diabetes UK, Action for Pulmonary Fibrosis, DC Action and Sarcoidosis UK to participate in the Patient and Public Involvement and Engagement Network of this exciting project.

Find out more!

The DEMISTIFI Study is holding an online discovery event on Tuesday September 20^th from 6pm-7.30pm.    

Register to hear Professor Jenkins explain the project, hear from patients living with fibrosing conditions, have the opportunity to ask questions, and most importantly find out how you can get involved!