SSC Subcommittee on Platelet Physiology Opens Project to Gather Information on Patients with PT-VWD
Thursday, October 30, 2014
Only 53 patients have been reported with platelet type von Willebrand disease (PT-VWD) worldwide. Most of these patients included in the PT-VWD registrywww.pt-vwd.org are currently inaccessible with limited follow up. Information about the disease is still lacking, particularly with respect to bleeding phenotype and severity of bleeding symptoms, phenotype-genotype correlations, standardized platelet aggregation-based testing and the need for routine DNA analysis for diagnosis. The SSC Subcommittee on Platelet Physiology is opening a new project designed to address this need.
This project aims to gather detailed information about the clinical and laboratory phenotypes of patients with PT-VWD as well as the current treatment practices, challenges and complications. New, non- previously explored information about pregnancy and pregnancy-associated complications with this disease will be sought.
PT-VWD remains underdiagnosed and sometimes misdiagnosed. The correct identification is critical to the treatment decision and life-threatening bleeding can occur if not diagnosed/treated appropriately, particularly at times of hemostatic challenges such as surgery, pregnancy and childbirth. Moreover, there is evidence to suggest that abnormalities beyond the bleeding condition may be associated with PT-VWD.
Over the years it has proven extremely difficult to capture the required information about these patients and worldwide cooperation is critical to gather the information required to support evidence-based diagnosis and management of this functional platelet defect.
To help in this effort, take this survey.