sVWD PATIENT REGISTRY
Welcome!
After years of development and testing, VWD Connect Foundation (VCF) opened the sVWD Patient Registry for public enrollment in July 2022. Under the guidance and commitment of Dr. Mrinal Gounder, Chair of the VCF Research Committee, this actively enrolling natural history study is gathering data concerning the sVWD Patient experience. This is significant and critical work; this data will provide the necessary information to the scientific community so together we can improve treatment and CURE von Willebrand disease.
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Why did we sponsor the Registry?
Severe VWD is an ultra-rare disease state, and scientists need to understand sVWD patients’ medical and life experiences to be able to move the research needle forward. As the U.S. sVWD National Patient Organization, the Foundation recognizes the critical importance of gathering this data and has developed this study to collect the information in a safe, methodical, and participant-friendly way.
What is the sVWD Patient Registry?
The sVWD Patient Registry is an IRB-approved online registry collecting longitudinal data from patients living with severe von Willebrand disease. Data collected may include patient demographics, medical and medication history, quality of life, bleeding history, and lab values. The modules are designed to reflect a full picture of each patient’s unique experience.
Who is involved?
The VCF Patient Registry Sub-Committee (PRSC)
Dr. Mrinal Gounder, Dr. Christopher Walsh, and S. Christina (Chrissy) Morgenthaler are the Co-Principal Investigators of this study. This group brings years of experience in clinical research, patient care, and study management. They have donated countless hours to the design and management of this project.
Along with their impressive backgrounds, two of the three co-PIs have direct personal experience with sVWD. Chrissy is a patient herself, and Dr. Gounder is a parent of a child with sVWD. Who better to lead us on the journey to a cure?
Click on the photos to learn more about the VCF Patient Registry Sub-Committee.
The VCF International Medical and Scientific Advisory Board (MSAB) was engaged to review and comment on the sVWD Patient Registry throughout each step of development. They will also be responsible for vetting data requests from interested researchers. To learn more about the VCF MSAB, click here.
Salus Independent Review Board (IRB) has approved this study, and the informed consent document. Salus IRB is a committee of scientific and non-scientific individuals who review, require modifications to, and approve or disapprove research studies according to federal laws. This group is also required by the federal regulations to provide periodic review of ongoing research studies.
sVWD Patient Volunteers – Not only are the majority of PRSC members living with VWD, additional fellow patients/Foundation Members volunteered to review, test, and give feedback during the development of the Registry. We are so grateful for their contributions.
For more information about the sVWD Patient Registry please contact:
Johnna Cesta
Research Coordinator
Coordinator@VWDRegistry.org
S. Christina Morgenthaler
Co-Principal Investigator
RegistryPI@VWDRegistry.org
Jeanette Cesta
Executive Director of VWD Connect, Study Sponsor
jcesta@vwdconnect.org
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Are you a sVWD patient interested in more information or joining us in this critical mission?
For more information about eligibility, the participation process, and participant data privacy:
To go directly to the secure sVWD Patient Registry site: