Natural History of Wilson Disease (NCT03334292) | Clinical Trial Compass
RecruitingNot Applicable
Natural History of Wilson Disease
United States, Germany, United Kingdom300 participantsStarted 2017-12-18
Plain-language summary
The purpose of the registry/repository is to provide a mechanism to store data and specimens to support the conduct of future research about Wilson disease (WD). The overall aim is to determine the optimal testing for diagnosis and parameters for monitoring treatment of WD that will aid product utilization and development.
Who can participate
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Inclusion Criteria:
* Known diagnosis of WD
* Able and willing to provide informed consent for adults (Parental/guardian permission (informed consent) and if appropriate, child assent for participants \<18 (or per local Institutional Review Board (IRB) regulation)
Exclusion Criteria:
* Diagnosis of WD has been excluded
* Unwilling to provide informed consent or assent
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1Since this study is creating a registry rather than testing a new treatment, what does participating actually involve for me day-to-day, and would it interfere with my current Wilson disease treatment plan?
2What kinds of information would be collected about me for this registry, and how will my personal health data be stored and protected over time?
3Could joining this registry help researchers better understand Wilson disease progression, and how might that benefit me or future patients even if there's no direct treatment being offered?
4Since this is listed as a natural history study with no assigned phase, does it mean there are no experimental treatments involved, and is my current standard-of-care treatment still my best option to focus on right now?
5Are there any time commitments or follow-up visits required to stay in this registry that I should know about before deciding whether it fits my situation?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.