Research Projects

The following is a list of Studies that have come to our attention.

Ongoing:

Participate in a Transplant Recipient Study

A research team based at Newcastle University has approached WDSG-UK to help reach out to liver transplant patients associated with our Group. The team is looking to improve understanding of life after solid organ transplantation. Their work is funded by NHS Blood and Transplant and part of the Newcastle and Cambridge NIHR Blood and Transplant Research Unit in Organ Donation and Transplantation http://odt.btru.nihr.ac.uk/theme-6/.

The team has developed transplant-specific patient-reported outcome and experience measures. These are surveys that allow transplant recipients to report on their quality of life, symptoms, and healthcare experiences after transplant. The team now needs help with testing these surveys to ensure they work as needed, as they are keen to make sure that their research represents the voices of transplant recipients across all solid organs.

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.