Natural History of Wilson Disease: Registry for Patients With Wilson Disease
Status: Recruiting
Location: See all (6) locations...
Study Type: Observational
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.
Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: f
View:
• 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)
Locations
United States
Connecticut
Yale University
RECRUITING
New Haven
Florida
Advent Health
RECRUITING
Orlando
Texas
Baylor College of Medicine
RECRUITING
Houston
Washington
Seattle Children's Hospital
RECRUITING
Seattle
Other Locations
Germany
Universitätsklinikum Heidelberg
RECRUITING
Heidelberg
United Kingdom
Royal Surrey Country Hospital
RECRUITING
Guildford
Contact Information
Primary
Ricarda Tomlin
ricarda.tomlin@yale.edu
(203) 785-2073
Backup
Sefa Keserci, PhD
sefa.keserci@yale.edu
(203) 3766043
Time Frame
Start Date: 2017-12-18
Estimated Completion Date: 2029-11-15
Participants
Target number of participants: 300
Related Therapeutic Areas
Sponsors
Leads: Yale University
Collaborators: Wilson Disease Association