Foundation Research

The Community Voices in Research registry is powered by the community and collects information about what it is like to live with a bleeding disorder from the people who know these conditions best: those with lived experience. This study describes a sample of female participants based on their diagnosis, race, ethnicity, income, age, employment, and education. Most participants identify as non-Hispanic and White. About half of the sample has a diagnosis of von Willebrand disease (VWD) or hemophilia A. The average age of participants is approximately 44 years. Most work full time, and the most commonly reported level of education is a high school diploma or equivalent. After adjusting for household size, the median annual income is about $23,000, with incomes ranging from $314 to $190,000. Researchers are continuing to study this sample to better understand how these demographic and socioeconomic factors relate to reproductive bleeding experiences among females. AI was used for this summary.

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The Community Voices in Research registry is community powered and collects information about what it is like to live with a bleeding disorder from those who know these conditions the best: lived experience experts. This research describes a sample of males and females comparing the amount of time that passed between their age at first symptoms and their age at the time of diagnosis. We have found that females tend to experience a greater time to diagnosis than males in the CVR registry, which is statistically significant for all diagnoses except VWD. The time to diagnosis appears to be decreasing for younger generations of women compared to their older counterparts. In terms of race, White males were more likely than non-White males to have a time to diagnosis of under one year, but no difference was found for females. For ethnicity, Hispanic males were more likely to have a time to diagnosis of under one year than non-Hispanics, but no difference was found for females.

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The Bleeding Disorders Research Collaborative (BDRC) aims to advance an accessible standard of care and quality of life for all people living with inheritable bleeding disorders. This goal will be achieved through collaborative and meaningful scientific inquiry, coordinated by an efficient research infrastructure, and undertaken by a diverse, capacitated workforce in partnership with an engaged community. The BDRC is supported by facilitative research policy and grounded in the principles of health equity, diversity, inclusion, accessibility, and belonging, striving for dignity, safety, well-being, and opportunities leading to health justice. Importantly, the initiative is fully informed by Lived Experience Experts, people affected by inheritable bleeding disorders, who are key members in the research development, implementation, and dissemination team.

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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.

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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.

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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

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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.

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The American Thrombosis and Hemostasis Network (ATHN) is the steward of extensive hemostasis and thrombosis data and analytic resources. The ATHN Affiliate Network consists of over 145 health care entities providing programs and services to individuals impacted by these conditions. Through its partnership with ATHN Affiliates, ATHN routinely collects demographic, clinical, and genetic data for the ATHNdataset, a de-identified, voluntary data set. The ATHNdataset is a rich source of data available for clinicians and clinical researchers to identify, explore, and advance knowledge around issues affecting the inherited bleeding disorders community with the goal of transforming care. Recently, ATHN received a grant to determine whether data contained in the ATHNdataset could be utilized, in conjunction with machine learning and artificial intelligence, to predict those people with hemophilia (PwH) who may experience a poor outcome. Over the past decade, as therapies for hemophilia have rapidly improved, both in both clinical efficacy and convenience, no consensus as to the definition of “poor outcome” exists.

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