RECRUITING

Natural History of Wilson Disease

Conditions

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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.

Official Title

Natural History of Wilson Disease: Registry for Patients With Wilson Disease

Quick Facts

Study Start:2017-12-18
Study Completion:2029-11-15
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT03334292

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:Not specified
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Known diagnosis of WD
  2. * 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)
  1. * Diagnosis of WD has been excluded
  2. * Unwilling to provide informed consent or assent

Contacts and Locations

Study Contact

Ricarda Tomlin
CONTACT
(203) 785-2073
ricarda.tomlin@yale.edu
Sefa Keserci, PhD
CONTACT
(203) 3766043
sefa.keserci@yale.edu

Study Locations (Sites)

Yale University
New Haven, Connecticut, 06520
United States
Advent Health
Orlando, Florida, 32803
United States
Baylor College of Medicine
Houston, Texas, 77030
United States
Seattle Children's Hospital
Seattle, Washington, 98105
United States

Collaborators and Investigators

Sponsor: Yale University

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2017-12-18
Study Completion Date2029-11-15

Study Record Updates

Study Start Date2017-12-18
Study Completion Date2029-11-15

Terms related to this study

Keywords Provided by Researchers

  • Wilson Disease

Additional Relevant MeSH Terms

  • Wilson Disease