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New study maps the hidden struggles of Wilson's disease patients in rural egypt

NCT ID NCT07241832

Knowledge-focused Sponsor: Assiut University Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting This study
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study looks at the real-life challenges faced by people with Wilson's disease in Upper Egypt, a rare condition where copper builds up in the body. Researchers will survey 66 patients and their caregivers about diet, knowledge, attitudes, and barriers to care. The goal is to understand what makes it hard to follow treatment and to map where patients live, so healthcare can be improved.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this study could reveal key barriers to care and help design better support programs for Wilson's disease patients in low-resource settings.
What could go wrong
This is an observational study, not a treatment trial, so it won't directly improve health. Results may not apply to other regions or populations.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 66 people

The number the study aims to enrol. It can still change while the study runs.

Expected to start

Dec 2025

An estimate. Start dates often move.

Expected to finish

Dec 2026

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Patients aged 12 years and older with a confirmed diagnosis of Wilson's Disease based on clinical, biochemical, radiological, slit-lap examination and genetic criteria, who are on regular follow up at Assiut Liver Center, and the Specialized Wilson's Disease Clinic

Ages

12 years and older

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * Patients aged 12 years and older with a confirmed diagnosis of Wilson's Disease based on clinical, biochemical, radiological, slit-lap examination and genetic criteria, who are on regular follow up at Assiut Liver Center, and the Specialized Wilson's Disease Clinic. * Patients who are clinically stable and able to participate in interviews or complete surveys. Exclusion Criteria: * Patients experiencing acute hepatic or neurological decompensation at the time of recruitment. * Individuals with cognitive impairments that preclude informed consent or meaningful participation. * Patients or caregivers who refuse to provide consent.

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Conditions

The condition(s) this trial relates to.

Wilson disease

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Wilson's disease

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The official record

    The full official record for this study. This one lists no contact details, but it is the first place any would appear.

    Open the record ↗

  2. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

More trials for these conditions

Other studies related to the condition(s) this trial covers.