The National Hemophilia Foundation’s State of the Science Research Summit: the foundation of a national research blueprint for inherited bleeding disorders
Lived experience experts: a name created by us for us
Soliciting international perspectives on an American national research agenda for inherited bleeding disorders
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities to transform the care of people with hemophilia
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities for mucocutaneous bleeding disorders
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities for ultra-rare inherited bleeding disorders
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research to advance the health of people with inherited bleeding disorders with the potential to menstruate
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities in health services; diversity, equity, and inclusion; and implementation science
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: facilitating research through infrastructure, workforce, resources and funding
The National Hemophilia Foundation State of the Science Research Summit initiative: executive summary
National Hemophilia Foundation Convenes Diverse Community Voices to Define an Actionable National Research Blueprint for Inherited Bleeding Disorders
National Hemophilia Foundation Enlists Diverse Patient Voices to Inform a National Research Blueprint for Inherited Bleeding Disorders
Bleeding Disorder Data Registry Reveals Racial/Ethnic Disparities That Could Significantly Impact Patient Journey
Poor outcomes in people with hemophilia: Physician and subject matter expert perspectives
Integrated Hemophilia Patient Care via a National Network of Care Centers in the United States: A Model for Rare Coagulation Disorders
Rare, chronic diseases such as hemophilia and other congenital coagulation disorders require coordinated delivery of services for optimal outcomes. Hemophilia Treatment Centers (HTCs) are specialized, multidisciplinary healthcare centers providing team-based care to meet the physical, psychosocial, and emotional needs of people with hemophilia (PWH) and may serve as a model for other rare coagulation disorders. Health-care purchasers, as well as the general medical community, may not appreciate the breadth and quality of services provided by HTCs. They exemplify the acculturalization and actualization of integrated care by providing comprehensive diagnostic and treatment services that reduce morbidity, mortality, avoidable emergency room visits, hospitalizations, and overall costs while promoting a longer lifespan and improved patient functioning and outcomes.
This is accomplished by a team-based approach relying upon a shared decision-making model to effectively prevent complications and manage symptoms in PWH, who are dependent on high-cost treatments. This article provides a concise yet comprehensive description of the core components of an HTC and the regional and national networks in the United States, which together achieve their incomparable value for all stakeholders.
Preferences of people with hemophilia A and B for treatments including gene therapies in the US: A discrete choice experiment
The Relationship Between Self-Reported Physical Activity, Treatment Regimen, Mental Health and Pain In Persons with Hemophilia
The relationship between self-reported physical activity, treatment regimen, mental health and pain in persons with hemophilia enrolled in NHF's community voices in research.(2021). ABSTRACTS. Haemophilia, 27: 3-20. https://doi.org/10.1111/hae.14385
Telegenetic Counseling for Females MLOF Participants
Passive Infusion Logging System (PILS): A Pilot
Community Voices in Research (CVR): A Patient-Centric Approach Moving the Future of Inherited Bleeding Disorders Forward
(2021), Abstract. Res Pract Thromb Haemost, 5: e12554. https://doi.org/10.1002/rth2.12554