Needs Assessment of Knowledge, Beliefs, and Attitudes of Patients With Hemophilia B About Gene Therapy Globally
Status: Recruiting
Location: See all (6) locations...
Intervention Type: Behavioral
Study Type: Observational
SUMMARY
Objective: To assess baseline knowledge, beliefs, and attitudes about gene therapy held by hemophilia B patients globally Secondary
Objectives: 1. To explore healthcare workers' (i.e., physicians, nurses, social workers, educators/academic coordinators) perspectives regarding the education needs of hemophilia B patients globally 2. To explore healthcare workers beliefs and attitudes about gene therapy 3. To identify preferences of patients with hemophilia B and their healthcare workers on how/by what method or pathway educational content should be provided.
Eligibility
Participation Requirements
Sex: All
Minimum Age: 12
View:
• 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
⁃ \- Doctors, nurses, social workers, pharmacists and educators who participate in the care of hemophilia B patients
Locations
United States
Tennessee
St. Jude Children's Research Hospital
RECRUITING
Memphis
Other Locations
Nepal
Civil Service Hospital
RECRUITING
Kathmandu
Peru
Hospital Dos De Mayo
RECRUITING
Lima
Sri Lanka
National Hospital of Sri Lanka
RECRUITING
Colombo
Thailand
Ramathibodi Hospital
RECRUITING
Bangkok
Viet Nam
National Institute of Hematology and Blood Transfusion
RECRUITING
Hanoi
Contact Information
Primary
Nidhi Bhatt, MD
binformedstudy@stjude.org
901-426-6982
Backup
Gail Fortner, BSN, RN
binformedstudy@stjude.org
901-595- 5702
Time Frame
Start Date:2022-01-18
Estimated Completion Date:2025-12
Participants
Target number of participants:150
Treatments
Hemophilia B patients
Patients ≥12 years of age with a diagnosis of moderate (FIX ≥1% and ≤2%) or severe (\<1%) hemophilia B
Parents or Caregivers
Parents or caregivers to patients with hemophilia 12-17 years of age
Healthcare Workers
Doctors, nurses, social workers, pharmacists and educators who participate in the care of hemophilia B patients