We are pleased to announce that the National Bleeding Disorders Foundation (NBDF) has been approved for a funding award through the Eugene Washington PCORI Engagement Award Program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The funds will support our work in prioritizing and standardizing patient-centered outcomes for women, girls, and people with the potential to menstruate with bleeding disorders.
  
Maria E. Santaella, PhD(c), MSN, RN-BC, CPHON, senior vice president of research strategy will lead the engagement project at the National Bleeding Disorders Foundation. The project will develop patient-centered outcomes for women and girls with bleeding disorders that are meaningful to patients, measurable for researchers and clinicians, and equitable across diverse communities.

Women and girls with inheritable bleeding disorders often face health problems that are overlooked, misunderstood, or diagnosed too late. These can include very heavy periods, serious bleeding after childbirth, chronic pain, and iron deficiency. These symptoms are too often dismissed or misdiagnosed, which can lead to treatment being delayed and result in preventable complications, including unnecessary hysterectomies.  

With this project, NBDF will bring together a diverse group of women, girls, and those who have or have had the propensity to menstruate with bleeding disorders, lived experience experts, advocates, OB/GYN clinicians, researchers, hematologists, and payers. They will work collaboratively to identify the health outcomes that are most important to women and girls with bleeding disorders and reflect the priorities that they care about. These could include factors like quality of life, pain, the impact of heavy periods on education or careers, mental health, or other areas identified by the participants. The resulting set of priorities will ensure that researchers, clinicians, and others who study bleeding disorders in women and girl will focus on questions and outcomes that matter to women and girls the most.

Over the course of a year, the project will form a national advisory committee that includes people from different geographic regions, treatment centers, and underserved communities. Participants will receive training and take part in a series of meetings and surveys designed to build consensus around the most important priorities.

“We are grateful to PCORI for its support of this project,” said Santaella. “By investing in a project that centers the voices and experiences of patients, they are helping ensure that women and girls with bleeding disorders have a stronger role in shaping the research that influences their care, health outcomes, and quality of life.”
  
The Convening Stakeholders to Develop Patient-Centered Outcomes for Women with Bleeding Disorders in the United States is part of a portfolio of projects funded by PCORI to help develop a community of patients, caregivers, clinicians and other stakeholders who are better equipped to engage as partners in all phases of patient-centered comparative clinical effectiveness research (CER) and to disseminate results of PCORI-funded studies. Through its Engagement Award Program, PCORI is creating an expansive network of individuals, communities and organizations who can leverage their lived experience and expertise to influence research to be more patient-centered, relevant and useful.  
  
PCORI is a nonprofit organization with a mission to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information that is needed to make better-informed health care decisions.