FAQs - sVWD PATIENT REGISTRY
WHO ARE WE ASKING TO PARTICIPATE?
Anyone who lives with Severe Von Willebrand Disease is invited to participate. Don’t worry if you are not sure if you qualify, we will walk you through the study eligibility requirements.
HOW ARE YOU PROTECTING MY PRIVACY?
The privacy and safety of the information you choose to share within the sVWD Patient Registry is our highest priority. As many of the people involved in the creation and execution of this study are patients themselves, we understand your concerns and value your time. Data is maintained in secure locations and access is strictly controlled. Only the co-PI’s and IRB-approved delegated registry staff will have access to your identified data. This means that they will be the only people who can link your identity to your responses. All others involved will only have access to de-identified data, meaning your responses will be linked only to your participant number, with no name or contact info provided.
Anytime you email a co-PI, only the co-PI’s will have access to that email. Staff of the Foundation, the Sponsor of this study, will not have access to direct email correspondence between the participants and the co-PI’s.
WHAT WILL HAPPEN IN THE STUDY?
If you are entered into the study, you will be able to start completing questionnaires related to your sVWD in a series of “modules” using an online portal. Some modules will be available to you in the Registry website right away, and others will be available in the future. You might be able to complete a module over the phone with Registry staff assistance or also in person during VWD Connect Foundation Inc. annual conferences.
There is no end date to this Registry, and it will remain open for as long as it is collecting data that are useful to the sVWD community. This study will remain open for at least 5 years. There are no costs to participants for taking part in the Registry.
WHO MAY REQUEST DATA FROM THE sVWD PATIENT REGISTRY?
VWD Connect Foundation believes the only way we can move forward in improving care of and curing VWD is through collaborating with scientists, clinicians and key stakeholders across the world. The Foundation will collect requests for data and forward them to the VCF Medical and Scientific Advisory Board. A subcommittee will review the request to verify a valid purpose and ensure that appropriate patient privacy/safety standards are in place. If approved, the Foundation will then co-ordinate the transfer of the de-identified data.