International Reach
Patients contributing data from across the globe
iWilson's Disease Registry
A secure, centralised global database for Wilson's Disease research
Recording health data from consenting individuals with Wilson's Disease worldwide to improve clinical outcomes and advance research into this rare genetic disorder.
Global Data for Patient Benefit
Patient-Centred
Advisory board includes patient representatives
Research-Driven
Data shapes clinical guidelines and future therapies
The International Wilson Disease (iWD) Registry was established in 2021 to describe the natural history of treated Wilson Disease. With more than 340 patients enrolled by January 2024, from participating centres in the UK, France, Belgium, Spain, Germany, Poland and Saudi Arabia, the Registry is generating a wealth of data designed to identify unmet needs of patients and research priorities. Orphalan sponsors the Registry.
The iWilson's Disease Registry collects accurate, de-identified health data from patients worldwide to advance our understanding of Wilson's Disease and improve treatment outcomes.
By participating in this global registry, patients contribute to a valuable resource that will help shape future treatment strategies and improve care for individuals with Wilson's Disease around the world.
Our Core Pillars
Built on principles of global collaboration, data security and clinical excellence
Global Database
Recording Wilson's Disease health data from patients around the world, creating a comprehensive resource that transcends geographic boundaries and enables international collaboration.
Secure & De-identified
Ensuring the highest standards of data privacy and security for all participants. All information is de-identified and protected using industry-leading security protocols.
Clinically Validated
Outcomes prioritised by our expert Scientific Advisory Board for the benefit of both physicians and patients, ensuring data collected is clinically meaningful and actionable.
Registry Impact
Building a comprehensive global resource for Wilson's Disease research
Registered Patients
Participating Countries
Research Sites
Advisory Board Experts
Access the Patient Registry Portal
Secure portal for patients, caregivers and healthcare professionals
Frequently Asked Questions
Who can participate in the registry?
Any individual with a confirmed diagnosis of Wilson's Disease who provides informed consent can participate in the iWilson's Disease Registry. Participation is voluntary and can be withdrawn at any time.
How is my data protected?
All patient data is de-identified and stored using secure, encrypted databases. We comply with international data protection regulations including GDPR and HIPAA. No personally identifiable information is shared with researchers or third parties.
How will my participation benefit Wilson's Disease research?
Your participation helps researchers understand disease progression, treatment effectiveness and patient outcomes on a global scale. This data informs clinical guidelines, supports new treatment development and improves care for all patients with Wilson's Disease.