August 4, 2021
The Platelet Physiology SSC, the VWF SSC and the Genomics in Thrombosis and Hemostasis SSC seek input from the ISTH community regarding standardization of nomenclature for Platelet-type Von Willebrand disease. Indeed, while the term “PT-VWD” has gained popularity since the description of the first gene mutation, certain shortcomings have been put forward in the last years, including that (a) it does not accommodate the protein name, or indicate the pathologic nature of the functional defect; (b) it may not account for anticipated future scientific development regarding other genetic defects; and (c) it may generate confusion with Von Willebrand Disease, a completely different entity. Please find detailed information about this project.
We invite you to fill in the following survey on the nomenclature of Platelet type-Von Willebrand Disease (PT-VWD) to help develop a consensus on standardized nomenclature for this disease. The deadline for submission of your responses to the survey is August 30 2021.