Foundation Research

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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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.

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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.

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(2021). ABSTRACTS. Haemophilia, 27: 3-20. https://doi.org/10.1111/hae.14385

Individuals and families in the bleeding disorders community and those who experience other chronic rare conditions have not typically been engaged in patient reported registries or in clinical studies during the initial study design phase. The more participants enrolled in CVR the stronger the data and the community. CVR will establish an audience to draw in for opportunities to participate in patient-reported outcome research and other efforts as well as providing the opportunity to educate and inform individuals and families in the bleeding disorders community.

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(2021), Abstract. Res Pract Thromb Haemost, 5: e12554. https://doi.org/10.1002/rth2.12554

This analysis evaluated relationships between pain limitations and 1) family history of IBD, social determinants, depression/anxiety scores and 2) use of marijuana, opioids and other medications, anxiety, and depression. The majority of CVR participants with an IBD report limitation in life or work activities associated with pain. Several moderating variables beyond pain intensity and medications were identified, suggesting opportunities for future interventional research.

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Knowing the importance of including the consumers voice in the future of research, the National Hemophilia Foundation (NHF) partnered with the software healthcare analytics company; ArborMetrix, to develop a cloud-based platform; NHF’s Community Voices in Research (CVR), formerly known as MyBDC.

Through CVR, NHF will be able to send out longitudinal surveys and follow participants for a minimum of 5 years.
 

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The objective of this study is to assess the relationship between self-reported physical activity, treatment regimen, mental health, and pain in persons with hemophilia (PWH) enrolled in CVR.
 

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Von Willebrand disease (VWD) is the most common inherited bleeding disorder known in humans, but there are numerous barriers to accurate and timely diagnosis. In January 2021, new evidence-based guidelines were released by the American Society of Hematology (ASH), the International Society on Thrombosis and Haemostasis (ISTH), the National Hemophilia Foundation (NHF), and the World Federation of Hemophilia (WFH) (James et al., 2021). The guidelines were designed to support patients, clinicians, and other health care professionals in promptly, accurately, and efficiently diagnosing VWD. Key recommendations in the guidelines include the use of bleeding-assessment tools when unusual bleeding is present and/or VWD is suspected; diagnostic assays; and the role of genetic vs. phenotypic testing for some types of VWD. Nurse practitioners can aid in identifying potential symptoms of VWD to help shorten the time from onset of symptoms to diagnosis.
 

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• The inherited bleeding disorders (IBD) community has witnessed significant advances in recent years thanks to novel therapeutic advances and technologies and improved diagnostic proficiency.

• Yet important gaps persistent, particularly for those with rare disorders and underserved populations, including women with IBD.

• A new initiative led by the National Hemophilia Foundation (NHF) and shaped by the voices of the patient community is underway to address this gap.

• Our goal: to design and implement a national research blueprint that outlines actionable strategies to address the most important needs within the community and opportunities to accelerate progress through coordinated collaboration.
   

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