Collecting health data and samples from people with Wilson disease
Stores data and samples from people with Wilson disease for future research.
Key facts
- Who runs it
- Yale University
- Where
- Houston, New Haven, Orlando, and Seattle, United StatesSee the 4 sitesAlso in 2 other countries, 2 sites
- Trial code
- Registry title
- Natural History of Wilson Disease
- Status
- Recruiting
- People taking part
- 300 people, planned
- Started
- 18 Dec 2017
- Expected to end
- 15 Nov 2029
- Type of study
- Observational
- Record updated
- 22 June 2026
Who can take part
AI summary
From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.
The trial is looking for people of any age with a known diagnosis of Wilson disease. It is a registry that stores data and samples for future research.
- Age
- No age limits are given. People under 18 can join with permission from a parent or guardian.
- Sex
- All sexes can join.
- Disease stage
- A known diagnosis of Wilson disease (WD).
Main reasons for not taking part
- Wilson disease has been ruled out
- Not willing to give informed consent or assent
The registry criteria, word for word
Show all 4 criteriaShow less
Who can take part
- 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)
Who cannot take part
- Diagnosis of WD has been excluded
- Unwilling to provide informed consent or assent
Where in United States
Also in 2 other countries, 2 sites
- Baylor College of MedicineHouston, United StatesContact: Reza AmeriniaTaking people
- Yale UniversityNew Haven, United StatesContact: Sefa Keserci, MDTaking people
- Advent HealthOrlando, United StatesContact: Ariana MoraTaking people
- Seattle Children's HospitalSeattle, United StatesContact: Ricarda TomlinNo longer taking part
About the trial
What the trial wants to find out
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.
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Contact the study team: see the registry record → Contacts and Locations
Print a page for my doctorData and sources
- Registry record
- Listed on ClinicalTrials.gov.
- Official title
- Natural History of Wilson Disease: Registry for Patients With Wilson Disease
- Plain-language title
- Collecting health data and samples from people with Wilson diseaseGenerated from the registry record. The registry title is the official one.
- AI summary
- From the trial's eligibility criteria. Read by machine on 15 November 2026.
- Record updated
- 22 June 2026