An observational study in Wilson Disease, sponsored by Yale University. Recruiting at 6 sites in 3 countries. Per ClinicalTrials.gov, last updated 2026-06-22.
Sponsored by Yale University · Observational
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Among 23 studies in Hepatolenticular Degeneration with a site in United States — 4 open to participants now, 8 under way, 1 of them phase 3. Hepatolenticular Degeneration · United States.
Among the 23 studies in Hepatolenticular Degeneration with a site in United States, this one is the only one that started in 2017, is one of 8 observational ones, and was the 6th registered.
80 studies on the registry are indexed under Hepatolenticular Degeneration; 31 are open to participants now.
Browse Hepatolenticular Degeneration studies →4 of the 23 studies in Hepatolenticular Degeneration with a site in United States are open now. Recruiting first, the newest first:
Orphalan · Sites in United States, China, Pakistan and 1 more country
Ages 8+
Prime Medicine, Inc. · Sites in United States, New Zealand
Ages 12+
Yale University · Sites in United States
Ages 18+
A study can be open while its sites in United States have not opened yet or have stopped. Only those recruiting at a site in United States →
Of the 21 Hepatolenticular Degeneration studies recruiting now, 16 (76%) set no upper age limit and 4 (19%) stop at 75 or younger; 14 take children under 18; 3 take healthy volunteers.
This study: all sexes · no healthy volunteers.
The full table on the hub →This tab as a report to print or save as PDF → With an account.
23 studies; the count open now beside each. This study's row is marked.
A study in two phases is counted once above. Listed by phase, each with its combined phases: Phase 1 6 · Phase 2 6 · Phase 3 4 · Phase 4 1
First in 1993; this study’s year is marked. 1 started in 2017.
By drug class, each counting the studies that test any of its medicines:
This study's planned enrollment of 300 is above the median of 72 across 35 observational studies indexed under Hepatolenticular Degeneration.
Median enrollment 42 across the 15 interventional studies, 51 across the 8 observational. Of the 15 that completed or were terminated, 10 (67%) have results posted.
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17 of 23 have an industry lead sponsor. The 8 most frequent:
Yale University is the lead sponsor of 1,771 studies on the registry; 295 are open to participants now.
Of its 221 completed or terminated interventional studies of FDA-regulated products, 129 (58%) have results posted.
Yale University has 3 studies filed under Hepatolenticular Degeneration — fewer than ten, so there is no comparison to draw.
1 of the studies in Hepatolenticular Degeneration with a site in United States that are under way reach primary completion within a year, 0 of them phase 3. Phase 3 first, then by date:
| Study | Primary completion |
|---|---|
| NCT03655223RTI InternationalEarly Check: Expanded Screening in Newborns | 2026-11-30 |
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Among the 23 studies in Hepatolenticular Degeneration with a site in United States, from their registry updates:
Nothing recorded among them since 2026-09-25.
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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.
There are three aims outlined as part of this research study.
Aim 1 is to study the natural history of a carefully characterized cohort of patients with WD followed longitudinally at Centers of Excellence for WD in the United States and in the United Kingdom.
Aim 2 seeks to evaluate parameters for diagnosis and treatment monitoring for patients on chelation therapy and zinc treatment for their WD. Data gathered in Specific aim 1 will be used for analyzing the components of the diagnostic scores for patients.
Aim 3 is intended to determine whether a composite index or a biomarker can be used as surrogate marker for treatment monitoring for current patients on therapy that can be used for future patient treatment trials.
Adult and pediatric patients being evaluated for or with a diagnosis of WD who are willing to participate in the registry at designated study sites around the United States and in the United Kingdom.
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Informed consent
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Create registry for Wilson disease
This outcome is a binary 'yes/no' outcome as to whether or not this study can successfully create a repository with the intent to store data and specimens to support the conduct of future research on Wilson disease.
Time frame: 5 Years
Not enrolling at this site.
Not enrolling at this site.
Started Dec 2017 (actual). Primary completion is estimated for Nov 2029, 142 months after the start.
How these figures are worked out, and which studies are left out of them.
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
Contact study teamGet an email when the registry record changes — status, dates, results — or when someone posts here.
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Nothing here yet. If you are running this trial, taking part in it, or weighing whether to, this is the place to say so.
Hepatolenticular Degeneration →