Registry for Wilson Disease in Spain
Registro de Enfermedad de Wilson en España
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 |
|---|---|
| Enrollment | 600 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Asociación Española para el Estudio del Hígado Academic / other |
| Locations | 1 site (Barcelona) |
| Trial ID | NCT06466291 on ClinicalTrials.gov |
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.
Who should consider this trial
Good fit: Ideal candidates for this registry are individuals with a confirmed diagnosis of Wilson Disease.
Not a fit: Patients who do not have a confirmed diagnosis of Wilson Disease or refuse to participate will not benefit from this registry.
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 performed: While this registry approach is not novel, similar studies have successfully improved understanding and management of genetic diseases.
Eligibility criteria
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 this trial is running
Barcelona
- 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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.