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Global study probes patient views on gene therapy for hemophilia b

NCT ID NCT05044845

Knowledge-focused Sponsor: St. Jude Children's Research Hospital 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
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 This study
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 interviewed 150 people with hemophilia B, their caregivers, and healthcare workers from around the world to learn what they know and how they feel about gene therapy. The goal is to create better educational materials and improve the consent process, especially in countries with limited resources. No treatment was given—only interviews were conducted.

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

150 people

The number who actually took part.

Started

Jan 2022

Finished

Oct 2025

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

Participants who meet the eligibility criteria

Ages

12 years and older

Sex

Anyone

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 ≥12 years of age * Diagnosis of moderate (FIX ≥1% and ≤2%) or severe (\<1%) hemophilia B * Parents or caregivers to patients with hemophilia 12-17 years of age Inclusion Criteria - Healthcare worker: \- Doctors, nurses, social workers, pharmacists and educators who participate in the care of hemophilia B patients Exclusion Criteria: * Diagnosis of Hemophilia A * Diagnosis of other non-Hemophilia B bleeding disorders Exclusion Criteria - Healthcare worker: * Health care workers who do not participate in the care of hemophilia B patients * Healthcare worker who is conducting the interviews

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Conditions

The condition(s) this trial relates to.

hemophilia B

As listed by the trial registrant

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

Gene therapy Hemophilia B

Contacts and locations

Locations

  • Civil Service Hospital

    Kathmandu, Nepal

  • Hospital Dos De Mayo

    Lima, Peru

  • National Hospital of Sri Lanka

    Colombo, 01000, Sri Lanka

  • National Institute of Hematology and Blood Transfusion

    Hanoi, Vietnam

  • Ramathibodi Hospital

    Bangkok, 10400, Thailand

  • St. Jude Children's Research Hospital

    Memphis, Tennessee, 38105, United States

More trials for these conditions

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