Status:
RECRUITING
The Severe Von Willebrand Disease (sVWD) Patient Registry
Lead Sponsor:
VWD Connect Foundation
Conditions:
VWD - Von Willebrand's Disease
Eligibility:
All Genders
Brief Summary
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 ...
Detailed Description
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). The initial launch of the registry will be lim...
Eligibility Criteria
Inclusion
- 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.
Exclusion
- Have a clinical diagnosis of acquired VWD
Key Trial Info
Start Date :
December 10 2021
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
January 1 2027
Estimated Enrollment :
400 Patients enrolled
Trial Details
Trial ID
NCT05437536
Start Date
December 10 2021
End Date
January 1 2027
Last Update
February 17 2025
Active Locations (1)
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1
VWD Connect Foundation
Wellington, Florida, United States, 33414