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BINFORMED: Knowledge, Beliefs, and Attitudes About Hemophilia Gene Therapy

About this study

Hemophilia B is a bleeding disorder in which the blood does not clot properly. Scientists worldwide are exploring the use of gene therapy to treat it.

This research study will take place in several countries. We want to find out how much people with hemophilia B, their caregivers, and health care workers know about gene therapy for this disease, and how they feel about it. People in this study will not receive gene therapy treatment.

We will interview hemophilia B patients, their caregivers, and health care workers. We will ask them what they know about gene therapy for hemophilia B and how they feel about it. These interviews will be recorded. The information will give new insight into what participants know about gene therapy and their attitudes and beliefs about it.

Eligibility overview

  • 12 years and older
  • Moderate or severe hemophilia B
  • Parents or caregivers to patients with hemophilia
  • Health care workers who care for patients with hemophilia B
     

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The above information is intended to provide only a basic description about a research protocol that may be currently active at St. Jude. The details made available here may not be the most up-to-date information on protocols used by St. Jude. To receive full details about a protocol and its status and or use at St. Jude, a physician must contact St. Jude directly.

Overview

Full title:

Needs Assessment of Knowledge, Beliefs, and Attitudes of Patients With Hemophilia B About Gene Therapy

Study goal:

To find out how much patients with hemophilia B, their caregivers, and health care workers know about gene therapy for this disease, and how they feel about gene therapy. This will help us better educate patients and caregivers about  gene therapy for hemophilia B.

Diagnosis:

Hemophilia B

Age:

12 years and older

Clinical trials categories:

Blood Disorders Hemophilia Genetic Syndromes

For physicians and researchers

Patients accepted to St. Jude must be referred by a physician or other qualified medical professional. Learn how St. Jude can partner with you to care for your patient.

 

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