The CHOICE Project

Recently Completed CHOICE Project Data Will Help Shape Future Advocacy Initiatives and Priorities

HFA Symposium (Las Vegas, April 2, 2016) – During the HFA Symposium, HFA Research Director Wendy Owens provided an overview of the recently completed CHOICE project, hinting at data to be released during the upcoming World Federation of Hemophilia meeting in Orlando this July. CHOICE was a projected sponsored by the Centers for Disease Control and Prevention (CDC) to try to assess care and needs of patients treated in non-HTC settings.  Over 150 stakeholders were involved in developing the survey, with support of 10 chapters. In total, 442 adults and 365 children completed the survey from 47 states and Puerto Rico, including ~22% of respondents receiving current care outside of an HTC. All but 23 completed the survey electronically. While HFA and CDC are working to complete data analysis ahead of the WFH poster presentation, HFA noted that participants reported unmet needs around provider education (including ER) around patient needs and new medicines and technologies, care quality, women’s care, access to care, management of comorbidities, and addressing insurance costs. CDC’s Vanessa Byams reflected initial scientific communications will focus on methodology, treatment including services and utilization of healthcare, inhibitors, infectious disease, comorbidities, joint disease and women’s experience (diagnosis, treatment, symptoms).