HFA Research is a Community Centered, Community Focused, and Community Driven program aimed at improving the lives of bleeding disorders community members.
HFA launched its Research program following the completion of the CHOICE Project (Community Having Opportunity to Influence Care Equity). HFA ran the CHOICE Project through a cooperative agreement with the Centers for Disease Control and Prevention (CDC) from October 2011 to September 2015. The CHOICE Project aimed to collect information on the health experiences of people who have a doctor-diagnosed bleeding disorder and do not receive care at a federally-funded hemophilia treatment center (HTC), though ultimately all community members could participate in the CHOICE Project, including moms with a child(ren) with a bleeding disorder.
Over 150 community members helped develop the survey used in the CHOICE Project. Because of the community’s gracious help and positive response to the CHOICE Project, HFA decided to launch the HFA Research program aimed at improving the lives of bleeding disorders community members.
How Can I Get Involved in HFA Research?
- Tell HFA what research topics are most important to you, your family, and your community? Please share your thoughts with us by clicking on the red “What should HFA research?” button below.
- Sign-up for HFA’s Community Research Portal: The research portal is the platform for HFA to collect data for research on the bleeding disorders community to more effectively serve the needs of bleeding disorder patients and their families.
- Open Surveys:
- Tell Us About You: This short survey ask you to tell us about you and your research interests.
- CHOICE 2.0: From the CHOICE results, we developed advocacy initiatives, programming and services to help address care and education gaps. To further understand the evolving needs of the community, we are launching CHOICE 2.0 to discover the long-term impact on living with a bleeding disorder
- Gene Therapy & You: Gene therapy is moving rapidly in our community. Participate in this survey so HFA can better understanding the community’s current gene therapy knowledge and identify gaps for educational resource development.
- Open Surveys: