Natural History of Wilson Disease (NCT03334292)
Natural History of Wilson Disease: Registry for Patients With Wilson Disease
🩺 Plain-English Summary (8th-Grade Level)
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 join: Review the eligibility criteria below.
Location: Yale University — New Haven, Connecticut
📋 "Do I Qualify?" — 1-Minute Self Screener
Instant ChecklistFull eligibility criteria are available on the official NIH protocol. View the criteria ↗
📍 All Participating Trial Locations (6 Sites)
- Yale University — New Haven, Connecticut
- Advent Health — Orlando, Florida
- Baylor College of Medicine — Houston, Texas
- Seattle Children's Hospital — Seattle, Washington
- Universitätsklinikum Heidelberg — Heidelberg,
- Royal Surrey Country Hospital — Guildford, Surrey
📞 Contact the Study Coordinator
Phone: (203) 785-2073
Email: ricarda.tomlin@yale.edu
Coordinator details come directly from the registered NIH protocol. Confirm the study is still recruiting before traveling.
💰 Cost, Insurance & Patient Rights
- 100% Free Items: The investigational treatment and protocol-required procedures are supplied at zero cost by the sponsor.
- Routine Patient Care: Under federal law (ACA § 2709) and many state statutes, routine care costs are covered during participation.
- Voluntary Participation: You may withdraw at any time without affecting your standard medical care.
More studies in Wilson Disease
- Prescreening Study to Identify Potential Wilson Disease Participants for Gene-Editing Clinical Trial — Los Angeles, California
- A Phase 1/2/3 Study of UX701 Gene Therapy in Adults With Wilson Disease — Los Angeles, California
- Off Treatment Urinary Copper Excretion in Wilson Disease, Pilot Study — New Haven, Connecticut
Explore by condition: All Wilson Disease clinical trials
💡 How to Participate
- Check the checklist above to see if you may qualify.
- Contact the study coordinator using the phone/email above.
- Ask about the visit schedule, what is covered at no cost, and any travel support.
- Confirm with your own doctor before making a decision.