Spanish Wilson Disease Registry
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- This is an observational study: the protocol does not assign a study treatment.
- Who it may be relevant to
- Registry conditions: Wilson Disease. Basic parameters: from 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- Spain
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Official title
Registro de Enfermedad de Wilson en España
Overview
The main objective and purpose of the Registry is to know the current status of Wilson Disease in Spain. As secondary objectives, the prevalence and incidence of the disease will be analysed. Likewise, the analysis aims to define future areas of interest in its pathogenesis, diagnosis, natural history, follow-up, prognosis and treatment. Improving knowledge at a national level can help to design screening strategies and improve diagnostic circuits.
Detailed description
Retrospective and prospective study.
Primary outcome measures
- To know the current status of Wilson Disease in Spain [Time frame: 2025]
Secondary outcome measures (2)
- To analyse the prevalence of Wilson Disease in Spain [Time frame: 2025]
- To analyse the incidence of Wilson Disease in Spain [Time frame: 2025]
Eligibility criteria
Inclusion criteria
- Patients with a confirmed Wilson Disease diagnosis
Exclusion criteria
- Refusal to sign the informed consent for the study
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Case-only
Study locations
Spain · 1 center
- Hospital Clinic — Barcelona
Identifiers
NCT: NCT06466291 · HCB/2021/1099