The relationship between self-reported physical activity, treatment regimen, mental health and pain in persons with hemophilia enrolled in Community Voices in Research
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.
Empowering Nurse Practitioners to Shorten Time to Diagnosis of von Willebrand Disease
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.
NHF Builds a Community-Driven National Research Blueprint for Inherited Bleeding Disorders
- 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.
Developing My Bleeding Disorders Community (MyBDC): A community-powered registry to provide a 360-view of living with a bleeding disorder
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.