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

Launched by ST. JUDE CHILDREN'S RESEARCH HOSPITAL · Sep 9, 2021

Keywords

ClinConnect Summary

This clinical trial is focused on understanding what patients with hemophilia B know, believe, and feel about gene therapy, which is a new treatment option that could greatly improve their health. Hemophilia B is a bleeding disorder that affects how blood clots, and gene therapy aims to provide a more effective and long-lasting solution, especially in places where access to traditional treatments is limited. The study also seeks to find out how healthcare workers view the educational needs of these patients, as well as their own beliefs about gene therapy. This information will help create better educational resources for patients and their families.

To participate in this trial, patients must be at least 12 years old and diagnosed with moderate or severe hemophilia B. Parents or caregivers of younger patients can also take part. Healthcare workers involved in the care of hemophilia B patients, like doctors, nurses, and social workers, are eligible as well. Participants can expect to share their thoughts and experiences regarding gene therapy, which will help researchers improve communication and education about this important treatment option. The trial is currently recruiting participants globally.

Gender

ALL

Eligibility criteria

• 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