Clinical trial Recruiting at 1 site Observational Ages 18 and up

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 typeObservational
Ages18 Years and up
SexAll
Enrollment600 (estimated)
SponsorAsociación Española para el Estudio del Hígado
Academic / other
Locations1 site (Barcelona)
StatusRecruiting
StartedDecember 2, 2021
Main results expectedDecember 2030
Study endsDecember 2030
Registry record updatedJune 20, 2024
Trial IDNCT06466291 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

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.

    Recruiting at 2 sites Phase 1/2 Prime Medicine, Inc. · New Haven, Connecticut and 3 other locations · NCT07748403

  • 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.

    Recruiting Yale University · New Haven, Connecticut · NCT07301216

  • 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.

    Recruiting Fondation Ophtalmologique Adolphe de Rothschild · Paris · NCT07075393

  • 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.

    Recruiting Centre Hospitalier Universitaire de Saint Etienne · Bron and 1 other locations · NCT06945081

  • 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.

    Recruiting Early Phase 1 First Affiliated Hospital of Zhejiang University · Hangzhou, Zhejiang · NCT06650319

  • 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.

    Recruiting Hospital Italiano de Buenos Aires · Buenos Aires, Buenos Aires · NCT06573723

How to take part

  1. Review the eligibility criteria above with your treating physician.
  2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
  3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.
Last reviewed 2026-11-14 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.