Patient Perspective
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.
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.
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.
VeDA's patient registry was previously hosted on the Luna platform.
Luna abruptly announced that they would cease operations in January 2024. We are working to relaunch the patient registry on another platform as soon as possible.
If you're interested in participating in VeDA's patient registry, sign up below to receive announcements when the new platform is launched.
The Association of Migraine Disorders (AMD) has established the Headache, Ear, Auditory, Dizziness, Sinus (HEADS) Registry to study chronic head and neck conditions. VeDA encourages people with any type of vestibular disorder to participate in the HEADS registry.
Data collected from patient registry participants was used in each of these studies.
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