Registry for Wilson Disease in Spain
Official title: Registro de Enfermedad de Wilson en España
Run by Asociación Española para el Estudio del Hígado · NCT06466291 · Data updated 2026-11-12
This study is collecting information about Wilson Disease in Spain to help understand how common it is and improve how it's diagnosed and treated.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 18 Years and up |
| Sex | All |
| Enrollment | 600 (estimated) |
| Sponsor | Asociación Española para el Estudio del Hígado Academic / other |
| Locations | 1 site (Barcelona) |
| Status | Recruiting |
| Started | December 2, 2021 |
| Main results expected | December 2030 |
| Study ends | December 2030 |
| Registry record updated | June 20, 2024 |
| Trial ID | NCT06466291 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this registry are individuals with a confirmed diagnosis of Wilson Disease.
✕Probably not a fit
Patients who do not have a confirmed diagnosis of Wilson Disease or refuse to participate will not benefit from this registry.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This registry aims to gather comprehensive data on the current status of Wilson Disease in Spain, focusing on both retrospective and prospective analyses. It will assess the prevalence and incidence of the disease while exploring areas related to its pathogenesis, diagnosis, natural history, follow-up, prognosis, and treatment. By improving national knowledge, the registry seeks to inform better screening strategies and enhance diagnostic processes for Wilson Disease.
Why it matters
Potential benefit: If successful, this registry could lead to improved screening and diagnostic strategies for Wilson Disease, ultimately enhancing patient outcomes.
How similar studies have gone: While this registry approach is not novel, similar studies have successfully improved understanding and management of genetic diseases.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * Patients with a confirmed Wilson Disease diagnosis Exclusion Criteria: * Refusal to sign the informed consent for the study
Where it's running
-
Hospital Clinic
Barcelona, Spain Recruiting
Study contacts
- Study coordinator: Asociación Española para el Estudio del Hígado Asociación Española para el Estudio del Hígado
- Email: registrowilsonaeeh@gmail.com
- Phone: 0034915551119
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
-
PM577a: a one-time gene-editing therapy for Wilson disease
This study tests PM577a, a gene-editing treatment, to see if it is safe and may help people with Wilson disease who have a p.H1069Q ATP7B mutation.
-
Best timing for 24-hour urine copper after a brief treatment break
This will see if a 24-hour urine copper test taken after a short, supervised pause in treatment reflects body copper levels in stable Wilson disease patients.
-
Renal Involvement in Wilson's Disease
This study tests how Wilson's disease affects the kidneys and who might be at risk for kidney problems.
-
Skin effects of D-penicillamine in people with Wilson disease
This project will use silicone molds and confocal imaging to see if D-penicillamine changes skin elasticity in people with Wilson disease compared with matched healthy volunteers.
-
Evaluating LY-M003 Injection for Wilson Disease
This study is testing a new gene therapy called LY-M003 to see if it is safe and effective for people with Wilson Disease.
-
Registry for Rare Diseases
This study is creating a detailed registry to collect information on rare diseases like amyloidosis and sarcoidosis to help improve how they are diagnosed and treated.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.