Wilson's Disease Support Group - UK

Striving to promote the wellbeing of patients with Wilson's disease, their families and friends

Research Projects


Introduction

The Wilson's Disease Support Group – UK is grateful to all parties interested in doing research into Wilson's disease.  The following is a list of people/organisations who are currently conducting studies/trials.  If you are a Wilson's disease patient and would like to take part in research, please complete and return the WD Patient Register - UK form (see link on right of this page) or contact WDSG-UK direct.

 

UCL Queen Square Institute of Neurology, London - The CROWD Study  (Cohort Research On Wilson's Disease) – A UK wide research Study on Wilson's disease

This Study was launched in 2019 and aims to see why some Wilson's disease patients develop liver problems and others develop neurological or psychiatric problems.  The Study is currently on hold due to the Covid 19 pandemic, but if you are interested in taking part please visit www.thecrowdstudy.com or contact the Study co-ordinator via WDSG-UK for further information.


University of Sheffield, Dept of Neuroscience
 
This is an ongoing Study in which a team at the University of Sheffield is investigating mitochondrial biomarkers in Parkinson's disease and other neurodegenerative diseases, including Wilson's disease. If abnormalities are found in mitochondria, there is the possibility of using so-called "mitochondrial rescue" drugs as a treatment. For further information please contact WDSG-UK.


Public Health England (PHE) – The National Congenital Anomaly and Rare Disease Registration – Wilson's Disease Pilot Study

PHE is working on a project to identify the national prevalence rate for Wilson's disease in England. We are very fortunate that Wilson's disease was chosen over all other rare diseases to pilot this scheme. PHE's aim is to help commissioners make the right healthcare decisions for WD patients and to improve their care.


iGEM – A Synthetic Biology Project

In 2016, a group of Oxford University students investigating biological techniques in treating rare diseases looked into the possibility of using novel probiotic therapeutics to treat Wilson's disease.  They presented their findings at an iGem jamboree in Boston, USA, and received a gold medal for their innovative work.