Community Voices in Research (CVR) is a community-powered registry hosted by the National Bleeding Disorders Foundation (NBDF), formerly the National Hemophilia Foundation (NHF), that collects, via electronic surveys, the lived experience of people affected by inherited bleeding disorders (BD) and their immediate family members. It is designed to transform experiences into evidence and help researchers understand what it means to live with a bleeding disorder and how current treatments, therapies, and policies affect the community. CVR is open to all adults affected by BDs as well as their parents, spouses, grand-parents, siblings, and children.
The information gathered will remain confidential and will always be reported in a grouped and deidentified manner. As a CVR participant, you will have access to this data via a Personalized Dashboard so that you can see how you compare to others like you, follow trends and patterns over time, and become a more active member of your healthcare team. This information will ultimately be used to identify ways of improving clinical outcomes and quality of life and identify research questions important to the community. Join so that your important perspective is included in this research project. It is the only way to ensure that all findings are relevant and generalizable to you. It will also help you stay up to date on other research opportunities and resources.