The Severe Von Willebrand Disease (sVWD) Patient Registry

Launched by VWD CONNECT FOUNDATION · Jun 24, 2022

Keywords

ClinConnect Summary

The Severe Von Willebrand Disease (sVWD) Patient Registry is a study aimed at gathering important information about patients who have severe Von Willebrand Disease (sVWD). This condition affects the blood's ability to clot properly, which can lead to excessive bleeding. The study will create an online registry where patients, or their representatives, can share details about their health, symptoms, and any lab tests they've had. The goal is to build a comprehensive database that researchers can use for both past and future studies to better understand sVWD and improve treatment options.

To be eligible for this registry, participants must have a clinical diagnosis of Von Willebrand Disease with low Von Willebrand factor levels (less than 20%). They should also live in the United States and be able to give consent either themselves or through a representative. Participants can expect to share their health information through the registry, but they do not need to provide medical documentation at the start. This study is open to all genders and is currently recruiting participants. Being part of this registry could help advance research and lead to better care for those living with sVWD.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • 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 Criteria:
• • Have a clinical diagnosis of acquired VWD