Actively Recruiting
Spanish Wilson Disease Registry to Understand Disease Status, Prevalence, and Incidence in Spain
Led by Asociación Española para el Estudio del Hígado · Updated on 2024-06-20
600
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
Researchers are conducting a registry study to understand the current status of Wilson Disease in Spain. This observational study aims to analyze the prevalence and incidence of Wilson Disease and to identify future research areas related to its causes, diagnosis, natural history, monitoring, prognosis, and treatment. The goal is to improve national knowledge to help develop better screening and diagnostic methods. This study is both retrospective and prospective in design, meaning it will collect and analyze past and ongoing data about patients diagnosed with Wilson Disease. It does not involve any treatment or intervention but focuses on gathering comprehensive information from patient records and follow-up. Participants will be observed through data collection regarding their diagnosis and disease progression. The main outcome measured is the current status of Wilson Disease in Spain by 2025, along with analyses of prevalence and incidence. The study involves no treatment administration, and participation includes signing informed consent and allowing access to medical data. Safety monitoring is not applicable as this is an observational study, and the study is expected to continue through 2030.
CONDITIONS
Brief Title
Spanish Wilson Disease Registry
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Patients with a confirmed Wilson Disease diagnosis
- Aged 18 years or older
- Willingness to provide signed informed consent
You will not qualify if you...
- Refusal to sign the informed consent for the study
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
Duration - Up to 6 years
Participants with Wilson Disease are observed over time to understand disease status, prevalence, and incidence in Spain.
Trial Site Locations
Total: 1 location
1
Hospital Clinic
Barcelona, Spain, 08036
Actively Recruiting
Research Team
A
Asociación Española para el Estudio del Hígado Asociación Española para el Estudio del Hígado
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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