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?
- VeDA is currently in the process of migrating our registry to a new platform. Stay tuned!
- Experiences Engaging Healthcare When Dizzy: To-Alemanji J, Ryan C, Schubert MC. Experiences Engaging Healthcare When Dizzy. Otol Neurotol. 2016 Sep;37(8):1122-7. doi: 10.1097/MAO.0000000000001145. PMID: 27525623.
- Regional differences in patient-reported outcomes as a proxy of healthcare practices for Americans living with vestibular symptoms: Souza WH, Grove CR, Gerend PL, Ryan C, Schubert MC. Regional differences in patient-reported outcomes as a proxy of healthcare practices for Americans living with vestibular symptoms. J Vestib Res. 2022 Jul 2. doi: 10.3233/VES-220022. Epub ahead of print. PMID: 35811550.
- Patients’ Experiences with Management of Benign Paroxysmal Positional Vertigo: Insights from the Vestibular Disorders Association Registry: Grove CR, Souza WH, Gerend PL, Ryan CA, Schubert MC. Patients’ Experiences with Management of Benign Paroxysmal Positional Vertigo: Insights from the Vestibular Disorders Association Registry. Patient Relat Outcome Meas. 2022 Jul 6;13:157-168. doi: 10.2147/PROM.S370287. PMID: 35821793; PMCID: PMC9271286.