This study aims to assess the baseline knowledge, beliefs, and attitudes about gene therapy held by hemophilia B patients globally, and secondarily to explore healthcare workers' perspectives. Its rationale is that transparent, culturally sensitive communication is vital to a high-quality consent process, especially in resource-limited countries, yet few educational resources exist in languages other than English. Data are collected through interviews; participants include patients aged 12 and over with moderate (FIX ≥1% and ≤2%) or severe (<1%) hemophilia B, parents or caregivers of patients aged 12-17, and healthcare workers involved in their care.
The summary above is a plain-language rendering of the official record. The original English title is shown for reference.
Criteria are reproduced from the ClinicalTrials.gov record in the original English. Only the trial team can determine eligibility.
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