Research for Females

Since 2019, HFA has been working to build capacity among females in the bleeding disorder (BD) community to participate in research and to encourage researchers to conduct research that includes and focuses on the needs of females with BD.

Much of this work was completed through HFA’s Females In Research Sharing and Translation (FIRST) project, which ran from 2019-2021 (PCORI Engagement Award #14528-HFA). The main goals of this project were to gain a better understanding of current levels of research participation among females, identify gaps in participation in research for females in the BD community, and provide education for females with BD diagnoses or symptoms around BD and patient-centered outcomes research and comparative effectiveness research (PCOR/CER). This project culminated in the creation of a Research Agenda for Females with BD by HFA’s Community-Based Research Network (CBRN), which was comprised of patients, researchers, and other stakeholders in the female BD community.

Concurrently with the FIRST project, HFA ran the Women In Research Engaged while Distanced (WIRED) project from 2020-2021 (PCORI Engagement Award #EAIN-00202) in response to stay-at-home orders due to the COVID-19 pandemic. This project comprised of a 4 week educational program for females with BD symptoms or diagnoses in a fully online, interactive, peer-led format. Topics covered included bleeding disorder basics, women’s health, and research and clinical trials. Patient representatives of the CBRN were selected from graduates of the WIRED program and played an essential role in building out the Research Agenda for Females with BD.

Following the completion of this work, HFA felt a need for more stakeholder support of and buy-in for the Research Agenda for Females with BD. In response to this, the Driving Stakeholder Support and Adoption of a Research Agenda to Improve Outcomes for Women with BD project was developed (PCORI Engagement Award #EASCS-23237). The goals of this project were to gather further feedback and refinements on the Research Agenda for Females with BD from additional stakeholders and community members, and to convene a broad group of community stakeholders to present the Research Agenda for Females with BD for consensus and adoption. This convening took place on October 28, 2022 in a hybrid in-person/online format with 32 stakeholders in attendance. The Research Agenda for Females with BD was unanimously accepted and organizational representatives in attendance expressed their interest in and commitment to furthering the work of research for females in this community in a collaborative effort.

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