What is a patient registry?
A patient registry is a database of health information that helps describe the patient experience to better inform policy-makers and the medical community so that improvements can be made to the diagnostic and treatment process.
Why Is a Patient Registry Important?
With data collected through this patient registry VeDA will be able to advocate for vestibular patients. Our goal is to reduce the time it takes to diagnose a vestibular disorder and ensure that patients are receiving appropriate treatment that will improve their healthcare outcomes.
How Will My Data Be Used?
VeDA’s medical advisors will analyze the data, looking for trends. Once sufficient data is collected it will be summarized to create a baseline from which to measure the progress of our advocacy efforts. As a participant you can select whether or not to share your data with medical professionals performing research.
How Do I Participate in VeDA’s Patient Registry?
- Click here to get started. Note: This will take you off the VeDA website.
- You will need to create an account with Invitae, the organization that hosts VeDA’s registry. Note: This account does not give you access to the VeDA forum.
- Once you have entered your personal information you will begin by filling out a basic health profile. Note: the Health Profile is generic and NOT vestibular specific, so some of the questions may seem very broad and/or not applicable to you – do your best to answer these questions as accurately and specifically as you can.
- You will then complete the Dizziness Questionnaire. This is VERY IMPORTANT, as it contains questions designed by VeDA’s medical advisors to facilitate our advocacy efforts.
- Confidentiality: Privacy settings allow you to select who can/cannot view your de-identified information. No one is given access to your name or contact information, including VeDA, unless you specifically elect to share it.
Help VeDA Spread the Word!
The more patients participate in the registry, the more valuable the data is. If you’d like to help us recruit vestibular patients to participate in VeDA’s patient registry, download this flier and bring it to your physician to distribute to their patients. You could also bring copies to your local senior center or other community organization.