The Wilson's Disease Registry
is a secure centralised database, sponsored and managed by Orphalan SA. It records health data on consenting people with Wilson's Disease (WD) throughout the world.
The Wilson's Disease Registry is a secure centralised database, sponsored and managed by Orphalan SA. It records health data on consenting people with Wilson's Disease (WD) throughout the world.
Medical care teams enter data at every specialist centre and clinic across the World, with over 99% of people with WD consenting to their data being submitted.
How can Registry data be used?
Non-identifiable Registry data is used to improve the health of people with Wilson's Disease through research, to guide quality improvement at care centres and to monitor the safety of new drugs.
A strict evaluation process, overseen by a committee of experts, ensures that Registry data is used in line with the consent that has been provided, and that it has maximum impact for people with Wilson's Disease.
Find out more about who can apply for data from the Registry, how you can submit a request, and recent and ongoing Registry data requests.
Find out more about the registry
Registry results are published each year in the annual report. Detailed and at-a-glance versions of the report are produced for people with Wilson's Disease and their families, as well as their healthcare teams.
The Wilson's Disease Registry is a secure centralised database, sponsored and managed by Orphalan. It records health data on consenting people with Wilson's Disease (WD) throughout the world.
