Novo Nordisk, along with the Coalition for Hemophilia B, Hemophilia Federation of America, and National Hemophilia Foundation have announced the B-HERO-S (Bridging Hemophilia Experiences Results and Opportunities into Solutions) study open to all patients with hemophilia B and the caregivers of children with hemophilia B.
About the Study
Building on the success of the original global Hemophilia Experiences Results and Opportunities (HERO) study (hosted by Novo Nordisk), which heavily featured experiences of patients and families with hemophilia A,-HERO-S is a new US only study sponsored by Novo Nordisk to learn more specifically about people with mild-moderate-severe hemophilia B and their parents/caregivers, and will include about 150 adults with hemophilia B and 150 caregivers of children with hemophilia B. The aim of the study is to explore the psychosocial issues in hemophilia B and their impact on the various aspects of life. The data collected will enhance the understanding of what it is like to live with hemophilia B, and may inform strategies to improve management of hemophilia B.
The study findings will be made known to healthcare providers, patients/caregivers, and patient advocacy organizations through presentations at hemophilia conferences, publications in scientific journals, leaflets, and websites (eg. clinicaltrials.gov).
B-HERO-S surveys were designed in collaboration with healthcare professionals, hemophilia B patients and caregivers, and patient organizations. Huron Consulting Group, a NY-based research company, will be administering the study and analyzing the results. None of the questions posed in the questionnaire are of a marketing nature. None relate to products.
The survey would require approximately 45-60 minutes to complete. Participants would be asked personal questions about their family, including hemophilia history and demographic information (race, religion, income, region in which you live, etc.); their/their child’s hemophilia; they and their family’s feelings about hemophilia; how hemophilia impacts their/their child’s life, work, and activities (includes questions about sexual life for men with hemophilia); and their/their child’s physical and emotional health.
Participants will not be charged to participate in the survey. Participants will be emailed a gift card with a value of $125 as compensation for their time.
Note: All eligible adult patients/caregivers can respond once to the survey.
There is no immediate direct benefit to participants associated with participation. However, the information obtained could be valuable to the hemophilia B community. There are no significant risks to participation in this study; however, answering some of the questions could cause participants to feel uncomfortable or upset. Participants have the right to skip any question they are not comfortable answering.
Please note: Personal identities of the survey respondents will be treated with the strictest confidentiality, in accordance with relevant Data Protection laws. Participants will remain anonymous; answers to survey questions will not be connected to participants individually, but rather aggregated and analyzed together with the rest of the respondents. There is still a potential risk of loss of confidentiality.
Participation in this survey is voluntary. Patients have the right to refuse participation in the study or to withdraw at any time.
Email addresses recorded will not be linked to survey responses.
For the survey for adult men or women (age 18 or older) with hemophilia B (Factor IX <40%), click here.
For the survey for parents/caregivers of a child (age less than 18) with hemophilia B, click here.
Novo Nordisk are looking for 150 adults with hemophilia and 150 caregivers of children with hemophilia to participate, so those interested should not delay.
Note: Questions or complaints about the survey, can be directed to firstname.lastname@example.org.