Research Projects
Introduction
The Wilson’s Disease Support Group – UK is grateful to all parties interested in conducting clinical research into Wilson’s disease (WD). If you are a WD patient living in the UK who might like to take part in clinical research or be interviewed by a Medical Research Company in matters relating to WD, please consider completing and returning the form for the WD Patient Register – UK (see link below). We can then contact you directly to let you know when a suitable study comes to our attention. Please note that Wilson’s disease patients who have received a liver transplant are also eligible to join the Register and take part in research. Thank you.
Ongoing:
The International Consortium for Health Outcomes Measurement (ICHON) invites patients in the Wilson’s disease community to complete a SURVEY about what they feel the needs of patients with liver disease are, so that their perspectives can be included in future liver disease healthcare decisions. The survey can be accessed by the button below.
Patients have until 20th June to complete it.
Details of the project are as follows:
- The project is led by a global Working Group of patient representatives, clinicians, and researchers. This group makes all final decisions on what outcomes and measures are included, with no funder involvement.
- The project is supported by funding from Roche China. However, they are a financial-only sponsor with no involvement in the Working Group, in the project’s development, and no influence over the final recommendations or data.
- All feedback collected is ANONYMOUS and accessible only to the ICHOM research team. No personal, sensitive or identifiable data is collected. Only aggregated data is shared with the Working Group to refine the recommendations. Aggregated results will eventually also be published later this year in a peer-reviewed manuscript to ensure full academic transparency.
Umanga de Silva of ICHOM says,
“We would be delighted to have the perspectives of WDSG-UK’s community included to ensure diverse patient voices are represented in this work and in future liver disease healthcare. ICHOM’s 48 Sets are currently being implemented in over 600 settings across more than 45 countries. The WD community’s input will help ensure that the lived experience of patients is heard.”
University of Sheffield, Dept of Neuroscience (SITraN)
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 val@wilsonsdisease.org.uk
Completed:
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 its aims were to see why some Wilson’s disease patients develop liver problems and others develop neurological or psychiatric problems.
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.
Download the Patient Register Form
