Hematology Disease Topics & Pathways:
Research, Bleeding and Clotting, bleeding disorders, adult, Clinical Practice (Health Services and Quality), Translational Research, Clinical Research, health outcomes research, pediatric, Diversity, Equity, and Inclusion (DEI) , health disparities research, Diseases, patient-reported outcomes, VWD, registries, Study Population, Human
Description:
Von Willebrand disease (VWD) is the most common inherited bleeding disorder. It is caused by deficiency or dysfunction of von Willebrand factor (VWF) a multimeric glycoprotein that plays critical roles in the circulation and is characterized by excessive mucocutaneous bleeding. There have been significant recent advances in our understanding of the biology of VWD and also in the attention being paid to the clinical impact of the disease. This session will highlight ongoing diagnostic challenges and special management situations. It will also present the patient perspective with a view towards future needs and opportunities to improve care.
During this session, Dr. Lavin will discuss challenges in the diagnosis of VWD, focusing on the most common subtype, type 1 VWD with levels in the 30-50 IU/dL range. She will suggest approaches for a frequent clinical dilemma, those presenting with bleeding symptoms and borderline plasma VWF levels. Age-related increases in plasma VWF levels complicates assessment of type 1 VWD. The resulting impact on diagnosis will be explored in the context of both adolescence and advanced age.
Dr. James will review the clinical scope of gastrointestinal bleeding in von Willebrand disease (VWD) patients, including current challenges in diagnosis and treatment. The biology of angiodysplasia and predisposition in patients with abnormal von Willebrand factor (VWF) will be discussed as well as therapeutic options for both acute management and longer term treatment of the vascular abnormalities.
Dr. Sholzberg will discuss what we have learned about the patient's experience with VWD, access and barriers to care. She will describe how structural sexism, stigmatization of vaginal bleeding, delayed diagnosis, and lack of timely access to care result in an increased frequency of bleeding events, iron deficiency, anemia, and decreased quality of life in patients with VWD. She will describe the positive shift in guidelines, and research prioritization that should promote health equity, and advancement of compassionate and patient centered care.
During this session, Dr. Lavin will discuss challenges in the diagnosis of VWD, focusing on the most common subtype, type 1 VWD with levels in the 30-50 IU/dL range. She will suggest approaches for a frequent clinical dilemma, those presenting with bleeding symptoms and borderline plasma VWF levels. Age-related increases in plasma VWF levels complicates assessment of type 1 VWD. The resulting impact on diagnosis will be explored in the context of both adolescence and advanced age.
Dr. James will review the clinical scope of gastrointestinal bleeding in von Willebrand disease (VWD) patients, including current challenges in diagnosis and treatment. The biology of angiodysplasia and predisposition in patients with abnormal von Willebrand factor (VWF) will be discussed as well as therapeutic options for both acute management and longer term treatment of the vascular abnormalities.
Dr. Sholzberg will discuss what we have learned about the patient's experience with VWD, access and barriers to care. She will describe how structural sexism, stigmatization of vaginal bleeding, delayed diagnosis, and lack of timely access to care result in an increased frequency of bleeding events, iron deficiency, anemia, and decreased quality of life in patients with VWD. She will describe the positive shift in guidelines, and research prioritization that should promote health equity, and advancement of compassionate and patient centered care.