REGISTRY OVERVIEW – VWD Connect

The Severe Von Willebrand Disease (sVWD) Patient Registry

A Longitudinal Natural History and Patient Outcomes Study

Welcome!

After years of development, VWD Connect Foundation (VCF) is proud to announce the December 2021 launch of the sVWD Patient Registry. Under the guidance and commitment of Dr. Mrinal Gounder, Chair of the VCF Research Committee, we are ready to begin gathering data concerning the sVWD Patient experience. This is a significant step in providing the necessary information to the scientific community so together we can improve treatment and CURE Von Willebrand Disease.

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WHAT is the sVWD Patient Registry?

The sVWD Patient Registry is an IRB approved on-line registry that will collect longitudinal data from patients living with Severe Von Willebrand Disease. Data collected will include patients’ experiences with their disorder (like symptoms, treatments, etc.), their quality of life, and medical information related to their disorder (like laboratory values).

WHY did VWD Connect Foundation sponsor the sVWD Patient 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 understands the critical importance of gathering this information in a safe, methodical way so we can provide the data to scientists with a robust research proposal.

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WHO is involved in the development of the sVWD Patient Registry?

Our co-Principal Investigators (co-PI’s), Alice Arapshian, S. Christina (Chrissy) Morgenthaler, M.S., MBA, Dr. Mrinal Gounder and Dr. Christopher Walsh, bring years of experience in both clinical research and systems platform security and design. Together they have donated endless hours in developing this research study. AND…three are directly affected by Type 3 sVWD!

Who better to lead us on the journey to a cure?

VCF PATIENT REGISTRY SUB-COMMITTEE

The VCF Patient Registry Sub-Committee (PRSC) consists of these people. Click on each name to view their resume.

MEDICAL & SCIENTIFIC ADVISORY BOARD

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

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 by following the federal laws. This group is also required by the federal regulations to provide periodic review of ongoing research studies.

sVWD PATIENT VOLUNTEERS

sVWD Patient Volunteers – not only are the majority of PRSC members living with VWD, additional fellow patients volunteered to review, test and comment on the development of the sVWD Patient Registry.

Listen as two of our co-PI’s discuss the sVWD Patient Registry at our Foundation’s 2021 Virtual Conference.

For more information about the sVWD Patient Registry please contact:

ALICE
ARAPSHIAN
Co-Principal Investigator
RegistryPI@VWDRegistry.org

S. CHRISTINA
MORGENTHALER
Co-Principal Investigator
RegistryPI@VWDRegistry.org

JEANETTE CESTA, Study Administration
RegistryAdmin@VWDRegistry.org

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Are you a VWD patient interested in more information or joining us in this critical mission?

For more information about eligibility, the participation process, and participant data privacy:

CLICK HERE

To go directly to the secure sVWD Patient Registry site:

CLICK HERE