The Severe Von Willebrand Disease (sVWD) Patient Registry
The Severe Von Willebrand Disease Patient Registry: A Longitudinal Natural History and Patient Outcomes Study
VWD Connect Foundation
400 participants
Dec 10, 2021
OBSERVATIONAL
Conditions
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 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.
Eligibility
Inclusion Criteria6
- Anyone meeting the diagnostic classification for von Willebrand disease
- Any VWF antigen or activity:
- a. Result <20% regardless of bleeding phenotype, or b. Result <30% with excessive bleeding symptoms including: i. Bleeding that resulted in hospitalization, required surgical procedure, red blood cell transfusion, Hemoglobin decrease >2g/dL, or ii. Intracranial, intraspinal, pericardial, retroperitoneal, intramuscular bleeding with compartment syndrome, or iii. Persistent or recurrent bleeding that is disruptive of work or school.
- 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
Exclusion Criteria1
- \. Have a clinical diagnosis of acquired VWD
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Locations(1)
View Full Details on ClinicalTrials.gov
For the most up-to-date information, visit the official listing.
NCT05437536