The Severe Von Willebrand Disease Patient Registry: a Longitudinal Natural History and Patient Outcomes Study
A web-based registry will be created by the sponsor, VWD Connect Foundation (VCF), to collect data on patients with severe Von Willebrand Disease (sVWD). Data will be self-reported by patients and/or collected by registry personnel, as appropriate. The purpose of the sVWD Patient Registry is to create a database of well-characterized (with respect to demographics, medical history, symptoms, laboratory and genetic data, etc.) patients with sVWD for participation in retrospective and prospective research.
• Have a clinical diagnosis of Von Willebrand Disease (VWD) with any Von Willebrand factor level(s) \< 20%
• Provide informed consent by participant or legally authorized representative
• Be willing and able to comply with study procedures and data collection
• Reside in the United States
⁃ NOTE: For inclusion criterion 1, it is not expected that participants will submit evidence of clinical diagnosis at screening; a participant's own confirmation that they have severe VWD will be sufficient for meeting the enrollment requirement and obtaining access to the registry. Laboratory values will be provided during the conduct of the study, and participants with Von Willebrand factor levels \> 20% may be excluded from data analysis on a case-by-case basis in consultation with a subcommittee of the VWD Connect Foundation Medical and Scientific Advisory Board.