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.
VWD - Von Willebrand's Disease
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.
The Severe Von Willebrand Disease (sVWD) Patient Registry
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VWD Connect Foundation, Wellington, Florida, United States, 33414
Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.
For general information about clinical research, read Learn About Studies.
to
ALL
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VWD Connect Foundation,
Christopher Walsh, MD, PhD, PRINCIPAL_INVESTIGATOR, Mt. Sinai School of Medicine
Mrinal Gounder, MD, PRINCIPAL_INVESTIGATOR, Memorial Sloan Kettering Cancer Center
Christina Morgenthaler, MS, MBA, PRINCIPAL_INVESTIGATOR, VWD Connect Foundation
Alice Arapshian, PRINCIPAL_INVESTIGATOR, VWD Connect Foundation
2027-01