The Wilson's Disease Registry is a secure centralised database, sponsored and managed by Orphalan SA.
What We Do
Launching in 2022, the International Wilson Disease Patient (iWD) Registry is a focussed study on the lives’ and treatments that children over 12 and adults with Wilson disease receive. The overall aim is to gather data on the natural history of Wilson disease in patients attending clinics in participating centres in Europe, UK and further afield in the coming years.
Our Aim
The collection of accurate de-identified data will be used for patient benefit through a systematic collection of core data outcomes, assessed to be clinically important for physicians and patients by a dedicated scientific advisory board including a patient representative.
Data Records
Typical data recorded reflects the standard of care clinical assessments (natural history of treated Wilson Disease) documented in the patient’s hospital health records. In reaching this aim, the iWD will:
Measure, and compare epidemiological and clinical aspects of Wilson disease in the participating countries, thereby potentially encouraging the identification of new standards for the management of Wilson disease.
To provide data for epidemiological research and identify groups of patients potentially eligible for multi-centre trials.
To support data sharing with patient support groups, clinicians, scientists and researchers who submit proposals of ethically approved studies to advance the knowledge and care of Wilson disease (subject to approval by the scientific committee of the iWD).
How it works
Below is some more information on how data is collected and processed.
The study design is a longitudinal, observational, non-interventional, standard of care study. Working with a contract research organization, the Sponsor (Orphalan SA, France) will collect data from routinely scheduled Wilson disease clinic visits at approximately 6-month intervals.
At study entry, in addition to data collected from the clinic visit, historical data focussed on how the patient presented and how the diagnosis of Wilson disease was confirmed and a summary of data from the intervening years will be entered in a password protected and encrypted study database.
An update on the progress of the study, including reporting of some of the data collected will be shared publicly on this website in the form of annual reports and notifications of where the data may have been presented at scientific congresses.
Questions About The Registry?
For specific enquires on the iWD registry please click on the 'Email Us' button or use the details on the Contact Page to get in touch.
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.
