HFA Project Featured in International, Peer-Reviewed Scientific Journal

Hemophilia Federation of America is excited to announce its work encouraging patient-centered research for females with bleeding disorders, conducted by members of its staff as well as trusted medical advisors in the bleeding disorders community, has been published in the international, peer-reviewed scientific journal Haemophilia.

“Females+ with bleeding symptoms or a diagnosis of a bleeding disorder enthusiastically want to learn about research and participate in clinical trials but have historically lacked the opportunity to do so,” said Janet Chupka, HFA’s Director of Engagement and Community Health. “It is essential that their voice is included at the table when ideas for research projects are outlined and developed.”

The publishing of this article is the culmination of a project that began in 2017 through several Eugene Washington Engagement Awards the organization received from the Patient-Centered Outcomes Research Institute (PCORI). The project sought to engage females in research to improve access to care and treatment, grounded in evidence generated with females and for females. It is part of the organization’s ongoing effort to address the challenges faced by females (including individuals assigned female at birth, intersex and non-binary individuals) with symptoms or diagnoses of a bleeding disorder.

“By bringing clinician researchers and females with bleeding disorders together as equal experts, we were able to outline a research agenda that is truly reflective of the actual needs of females and that will improve diagnosis and clinical care for females with bleeding disorders,” said Chupka.

The powerful stories and experiences gathered by HFA from the females in the bleeding disorders community formed the basis for initiating this project idea. HFA formed a community-based research network of researchers, thought leaders, advocates and female patients to build out a research agenda that outlines research topics and questions important to females with bleeding disorders and medical experts in this field.

Publication of this project in Haemophilia ensures research for females is accessible to clinicians, researchers, and other medical professionals in the United States and beyond. Current HFA staff members Janet Chupka and Whitney Armijo, former staff members Mabel Crescioni and DeBran Traver, members of HFA’s professional medical advisory board and the members of the community-based research network contributed to the publication. Read the full publication at https://onlinelibrary.wiley.com/doi/10.1111/hae.14883.