Congenital Bleeding Disorder, Haemophilia B, Haemostasis
Conditions
Brief summary
This study is conducted in the United States of America (USA). Tha aim of this study is bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S).
Interventions
OTHERNo treatment given
This is an online web-based cross-sectional survey in which participants will complete one of two questionnaires. There will be no treatment.
Sponsors
Novo Nordisk A/S
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Adults aged below or equal to 18 years with hemophilia B (any severity, with or without inhibitors) * Caregivers of children currently aged below 18 years with hemophilia B (any severity, with or without inhibitors) * Subjects must have access to the internet, either at home or at a location convenient to them * Provision of informed consent before the start of any survey-related activities
Exclusion criteria
* Inability to understand and comply with written instructions in English * Previous completion of the B-HERO-S study with receipt of compensation * Mental incapacity, unwillingness or language barriers precluding adequate understanding or cooperation
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| An online survey of Prevalence and characteristics of adults with hemophilia B | At day 0 |
| An online survey of Prevalence and characteristics of children with hemophilia B (and their parents) | At day 0 |
| An online survey of Prevalence of psychosocial and other comorbidities in patients with hemophilia B | At day 0 |
Secondary
| Measure | Time frame |
|---|---|
| Percentage of participants reporting hemophilia interference with physical activities | At day 0 |
| Percentage of participants reporting hemophilia interference with relationships | At day 0 |
| Health related quality of life: EuroQol | At day 0 |
| Health related quality of life:EQ-5D-5L | At day 0 |
| Percentage of participants reporting difficulty with access to treatment (e.g. factor) | At day 0 |
| Health related quality of life: BPI (Brief Pain Inventory) short form - Pain severity and interference | At day 0 |
| Health related quality of life: HAL (Hemophilia Activities List) | At day 0 |
| Health related quality of life: HemoCAB (Caregiver Hemophilia Burden Scale | At day 0 |
| Drivers of psychosocial impact (e.g. hemophilia severity, age, weight, prior treatment history, education) | At day 0 |
| Health related quality of life: VAS (Visual Analog Scale) | At day 0 |
| An online survey of Percentage of participants reporting difficulty with access to treatment centers | At day 0 |
| Percentage of participants reporting hemophilia interference with employment/education | At day 0 |
Countries
United States
Outcome results
None listed