HFA to Present CHOICE Project Data at World Federation of Hemophilia World Congress
Â The CHOICE Project was a first-of-its-kind data collection from people with hemophilia and other bleeding disorders.
FOR IMMEDIATE RELEASE: July 21, 2016
Contact: Sonji Wilkes (202)-675-6984 or email at firstname.lastname@example.org
Hemophilia Federation of America (HFA) announced today that it will present new data from its CHOICE Project at the XXXII International Congress of the World Federation of Hemophilia (WFH) in Orlando, FL, July 24-28, 2016.
HFA’s poster will highlight the first-of-its-kind data collected from people with hemophilia and other bleeding disorders who do not receive care at federally-funded hemophilia treatment centers (HTC). HFA ran its CHOICE Project (Community Having Opportunity to Influence Care Equity) with support from the bleeding disorders community. The CHOICE Project survey collected many types of data on people not attending HTCs, including diagnosis, treatment regimen and treatment products used, inhibitor status, joint function and disease, bleeding history, HIV and hepatitis infection and other comorbidities, health services utilization, demographics, and patient satisfaction.
“We look forward to full analysis of the CHOICE Project data to learn about the health experiences of people not receiving care at HTCs,” said Kimberly Haugstad, HFA’s Executive Director. “Since no data is collected on this population, what we have collected during the CHOICE Project is unique. This data could help us understand how best to provide support, programming, and to advocate for people not receiving care at HTCS. We could learn more about potentially underrepresented members of our community.”
HFA’s Director of Research, Wendy Owens, will be onsite at the WFH meeting to discuss the poster.
Poster Presentation: Public Health Surveillance of People Not Receiving Care at US Federally-Funded Hemophilia Treatment Centers: Methods and Demographics of the CHOICE Project
Tuesday, July 26, 10 AM to 6 PM
World Federation of Hemophilia World Congress, Orlando, Florida
Hemophilia Federation of America is a national 501(c)(3) organization consisting of more than 30 member organizations and numerous individual members who offer assistance and grassroots advocacy education on behalf of the bleeding disorders community. Incorporated in 1994, HFA provides programs and services to improve the quality of life for persons with hemophilia, von Willebrand disease (VWD) and other rare bleeding disorders. For more information, visit our website at www.hemophiliafed.org or call 1-800-230-9797