Bridging Hemophilia B Experiences, Results and Opportunities Into Solutions (B-HERO-S)

Novo Nordisk A/S449 enrolled

Overview

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).

Study Type

OBSERVATIONAL

Enrollment

449

Conditions

Haemostasis Congenital Bleeding Disorder Haemophilia B

Interventions

No treatment givenOTHER

This is an online web-based cross-sectional survey in which participants will complete one of two questionnaires. There will be no treatment.

Eligibility

Sex: ALLMin age: 18 Years

Medical Language ↔ Plain English

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

Locations (1)

Novo Nordisk Clinical Trial Call Center

Plainsboro, New Jersey, United States

Outcomes

Primary Outcomes

An online survey of Prevalence and characteristics of adults with hemophilia B

Time frame: At day 0

An online survey of Prevalence and characteristics of children with hemophilia B (and their parents)

Time frame: At day 0

An online survey of Prevalence of psychosocial and other comorbidities in patients with hemophilia B

Time frame: At day 0

Secondary Outcomes

Percentage of participants reporting difficulty with access to treatment (e.g. factor)

Time frame: At day 0

An online survey of Percentage of participants reporting difficulty with access to treatment centers

Time frame: At day 0

Percentage of participants reporting hemophilia interference with employment/education

Time frame: At day 0

Percentage of participants reporting hemophilia interference with physical activities

Time frame: At day 0

Percentage of participants reporting hemophilia interference with relationships

Time frame: At day 0

Health related quality of life: EuroQol

Time frame: At day 0

Health related quality of life:EQ-5D-5L

Time frame: At day 0

Health related quality of life: VAS (Visual Analog Scale)

Data from ClinicalTrials.gov

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