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- Title
Patient‐centred research agenda for females with bleeding disorders.
- Authors
Crescioni, Mabel; Armijo, Whitney; Chupka, Janet; Tarver, DeBran; Sidonio, Robert; Brown, Megan C.; Haley, Kristina M.; Huguelet, Patricia; Bowe‐Hause, Karen; Conde, Julia; Johnson, Stormy; Iftikhar, Aamina; Lerman, Candace
- Abstract
The Hemophilia Federation of America (HFA) has been advocating for females with bleeding disorders (BD) in the USA for the past 10 years. HFA received funding from the Patient-Centered Outcomes Research Institute (PCORI) to engage females in research and develop a research agenda (RA) for females with BD. The RA, developed through a community-based research network (CBRN) composed of patients, clinician-researchers, and advocates, outlines research topics and questions for females in different stages of life, including adolescence, reproductive age, and menopause. The RA aims to inform research projects that address the needs of females with BD and improve their access to care and treatment options.
- Subjects
CHILDBEARING age; FEMALES; COMMUNITY-based participatory research; HEMORRHAGE; RESEARCH institutes
- Publication
Haemophilia, 2023, Vol 29, Issue 6, p1665
- ISSN
1351-8216
- Publication type
Article
- DOI
10.1111/hae.14883