Spanish Wilson Disease Registry

June 14, 2024 updated by: Asociación Española para el Estudio del Hígado

Registro de Enfermedad de Wilson en España

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.

Study Overview

Status

Recruiting

Conditions

Detailed Description

Retrospective and prospective study.

Study Type

Observational

Enrollment (Estimated)

600

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Contact

  • Name: Asociación Española para el Estudio del Hígado Asociación Española para el Estudio del Hígado
  • Phone Number: 0034915551119
  • Email: registrowilsonaeeh@gmail.com

Study Locations

  • Spain
      • Barcelona, Spain, 08036
        • Recruiting
        • Hospital Clínic
        • Contact:
          • Zoe Mariño

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

  • Adult
  • Older Adult

Accepts Healthy Volunteers

No

Sampling Method

Non-Probability Sample

Study Population

Wilson Disease patients under follow-up in participating centres in Spain who agree to participate in the registry by signing the informed consent form.

Description

Inclusion Criteria:

  • Patients with a confirmed Wilson Disease diagnosis

Exclusion Criteria:

  • Refusal to sign the informed consent for the study

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Time Frame
To know the current status of Wilson Disease in Spain
Time Frame: 2025
2025

Secondary Outcome Measures

Outcome Measure
Time Frame
To analyse the prevalence of Wilson Disease in Spain
Time Frame: 2025
2025
To analyse the incidence of Wilson Disease in Spain
Time Frame: 2025
2025

Other Outcome Measures

Outcome Measure
Measure Description
Time Frame
To define future areas of interest in Wilson Disease
Time Frame: 2025
To define future areas of interest in the disease pathogenesis, diagnosis, natural history, follow-up, prognosis and treatment
2025

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

Asociación Española para el Estudio del Hígado

Investigators

  • Study Director: Zoe Mariño, Asociación Española para el Estudio del Hígado

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

December 2, 2021

Primary Completion (Estimated)

December 1, 2030

Study Completion (Estimated)

December 1, 2030

Study Registration Dates

First Submitted

June 14, 2024

First Submitted That Met QC Criteria

June 14, 2024

First Posted (Actual)

June 20, 2024

Study Record Updates

Last Update Posted (Actual)

June 20, 2024

Last Update Submitted That Met QC Criteria

June 14, 2024

Last Verified

June 1, 2024

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • HCB/2021/1099

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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