Glanzmann Thrombasthenia beyond bleeding: Insights from lived experience experts
Glanzmann Thrombasthenia (GT) is a rare inherited platelet disorder caused by a qualitative or quantitative defect of the glycoprotein IIb/IIIa complex. The bleeding phenotype, psychosocial impact, and patient perspectives in GT remain inadequately characterized. This abstract explores disease burden, unmet medical and psychological needs, and gaps in care associated with GT.
The relationship between different pain measures, depression, and social support and race and ethnicity in persons with hemophilia
Disparities in healthcare and health outcomes within minoritized and marginalized populations have been extensively documented in the literature. However, despite growing evidence that race/ethnicity may have a negative impact, few studies in BDs account for these variables when analyzing results. This analysis describes the relationship between age, birth sex, pain intensity, impact, and interference; depression, and social support and race/ethnicity in people with hemophilia A and B participating in CVR.
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
Relationship between Perceived Social Support, Mental Health, Activity, and Chronic Pain in Persons with Inheritable Bleeding Disorders
The aim of this analysis was to describe the relationship between self-reported mental health diagnosis, history of mental health treatment, participation in physical activity, chronic pain, and social support. Persons with inheritable bleeding disorders with self-reported mental health conditions had at least 1 mental health comorbidity, report a lack of perceived social support and were less physically active than Persons with inheritable bleeding disorders without a self-reported mental health condition
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
The demographic disparities between WCNHs and other participants in the CVR are critical and emphasize the need to focus on correlations between known social determinants of health and self-reported health outcomes and quality-of-life information.
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 objective of this study was to assess the relationship between self-reported physical activity, treatment regimen, mental health, and pain in persons with hemophilia (PWH) enrolled in CVR. Despite education to the contrary, PWSH continue to engage in high-risk, aggressive physical activities and would like to be even more physically active. As treatment options progress, offering more opportunity for physical activity, research is required to understand an acceptable balance between benefit and harm in PWH.
(2021). ABSTRACTS. Haemophilia, 27: 3-20. https://doi.org/10.1111/hae.14385