Researchers at the University of Rochester are interested in creating a patient-reported outcome measure that will assess the health, symptoms, and disease burden of individuals with von Willebrand disease. The study involves completing demographic questions and completing an online survey asking about the symptoms of von Willebrand disease you experience.
Living with VWD? Your symptom experience is vital.
Study Title: The Von Willebrand Disease-Health Index (VWD-HI): Development of a Patient-Reported Outcome Measure for Von Willebrand Disease
Principal Investigator: Chad Heatwole, MD, MS-CI
Study Details:
Researchers at the University of Rochester are interested in creating a patient-reported outcome measure that will assess the health, symptoms, and disease burden of individuals with von Willebrand disease. This study is being completed by Dr. Chad Heatwole from the University of Rochester’s Department of Neurology. This study aims to identify the symptoms that have the greatest impact on quality-of-life for individuals with von Willebrand disease. This will help guide future research involving individuals with von Willebrand disease.
Who can participate:
- Be 18 years old or older
- Be diagnosed with von Willebrand disease
- Reside in the United States, Canada, United Kingdom, European Union, or Australia
- Speak, read, and understand English
What’s Involved:
The study involves completing demographic questions and completing an online survey asking about the symptoms of von Willebrand disease you experience. The survey will take approximately 10 minutes to complete, and you may skip any questions that you do not wish to answer. All responses will be anonymous and strictly confidential.
How to participate:
Interested participants can click the link below to participate:
https://redcap.link/VWDsurvey
