{"id":136,"date":"2026-09-22T13:06:39","date_gmt":"2026-09-22T13:06:39","guid":{"rendered":"https:\/\/funny-fermi.104-248-174-66.plesk.page\/?page_id=136"},"modified":"2026-10-29T11:52:54","modified_gmt":"2026-10-29T11:52:54","slug":"iwilsons-registry","status":"publish","type":"page","link":"https:\/\/funny-fermi.104-248-174-66.plesk.page\/fr\/iwilsons-registry\/","title":{"rendered":"iWilsons Registry"},"content":{"rendered":"
\n<\/ellipse><\/path><\/path><\/svg>\n<\/div>

\niWilson's Disease Registry\n<\/h1><\/div>

\nA secure, centralised global database for Wilson's Disease research\n<\/p>

\nRecording health data from consenting individuals with Wilson's Disease worldwide to improve clinical outcomes and advance research into this rare genetic disorder.\n<\/p>

\nVisit Registry Portal\n<\/span>
\n<\/path><\/path><\/path><\/svg>\n<\/div><\/a>\nLearn About Wilson's Disease\n<\/a><\/div>
\n<\/path><\/svg>\n<\/div>\nBack\n<\/span><\/button><\/div><\/section>
\nWE SOLVE\n<\/span><\/header>
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\nGlobal Data for Patient Benefit\n<\/h2>
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\nInternational Reach\n<\/h3>

\nPatients contributing data from across the globe\n<\/p><\/div><\/article>

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\nPatient-Centred\n<\/h3>

\nAdvisory board includes patient representatives\n<\/p><\/div><\/article>

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\nResearch-Driven\n<\/h3>

\nData shapes clinical guidelines and future therapies\n<\/p><\/div><\/article><\/div><\/div>

\nThe 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.\n<\/p>

\nThe 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.\n<\/p>

\nBy 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.\n<\/p><\/div><\/div><\/div><\/section>

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\nOur Core Pillars\n<\/h2>

\nBuilt on principles of global collaboration, data security and clinical excellence\n<\/p><\/header>

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\nGlobal Database\n<\/h3>

\nRecording Wilson's Disease health data from patients around the world, creating a comprehensive resource that transcends geographic boundaries and enables international collaboration.\n<\/p><\/article>

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\nSecure & De-identified\n<\/h3>

\nEnsuring the highest standards of data privacy and security for all participants. All information is de-identified and protected using industry-leading security protocols.\n<\/p><\/article>

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\nClinically Validated\n<\/h3>

\nOutcomes prioritised by our expert Scientific Advisory Board for the benefit of both physicians and patients, ensuring data collected is clinically meaningful and actionable.\n<\/p><\/article><\/div><\/div><\/section>

\"Father
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\nReal-world data collected through registries supports ongoing research and the advancement of care for patients with Wilson's disease.\n<\/p>\nLearn about Wilson's Disease\n<\/span>

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\nOUR IMPACT\n<\/span>

\nRegistry Impact\n<\/h2>

\nBuilding a comprehensive global resource for Wilson's Disease research\n<\/p><\/header>

\n300+\n<\/span>

\nRegistered Patients\n<\/h3><\/article>
\n7\n<\/span>

\nParticipating Countries\n<\/h3><\/article>
\n15+\n<\/span>

\nResearch Sites\n<\/h3><\/article>
\n8\n<\/span>

\nAdvisory Board Experts\n<\/h3><\/article><\/div><\/div><\/section>

\nAccess the Patient Registry Portal\n<\/h2>

\nSecure portal for patients, caregivers and healthcare professionals\n<\/p><\/div>\nVisit iWilson Registry\n<\/span>

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\nFrequently Asked Questions\n<\/h2>

\nWho can participate in the registry?\n<\/h3>

\nAny 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.\n<\/p><\/article>

\nHow is my data protected?\n<\/h3>

\nAll 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.\n<\/p><\/article>

\nHow will my participation benefit Wilson's Disease research?\n<\/h3>

\nYour 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.\n<\/p><\/article><\/div><\/div><\/section>