Wilson's Disease Patient Register – UK
WDSG-UK is delighted to announce the launch of the Wilson's Disease Patient Register - UK, the main aim of which is to support medical research into Wilson's disease.
Any patients living in the UK who have been diagnosed with Wilson's disease, will be eligible to have their details entered on 'The Register'
Any patients living in the UK who have been diagnosed with Wilson's disease, whether or not they have received a liver transplant, will be eligible to have their details entered on 'The Register'.
If you are a Wilson's disease patient, or are the parent or guardian of a child with the disease, and you would like to participate, please download the Registration Form and send the completed form to Valerie Wheater, the WD Patient Register Co-ordinator, (details printed at the end of the form.)
We encourage you to register now.
Alternatively, for further details, please email Val at firstname.lastname@example.org.
If you, as a clinician or research scientist with an interest in Wilson's disease, have a request or an initial query relating to the Register, please contact the Register Coordinator at the email address: email@example.com.
Request details should include the following:
Short synopsis of the research request including:
- NHS or other Authorisation body details
- Brief description of research, objectives and timescales
- Patient involvement outline
- Research contact details
Please note: a small WDSG-UK team will review and validate all research requests before agreeing to involve patients.