WHAT IS A PATIENT REGISTRY?
A patient registry is a database of patient-reported 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. Patient health information is kept private - no personally identifiable patient information is ever disclosed.
Purpose of Advisory Council
It is essential for the vestibular patient experience to be represented at every stage of the patient registry process. The Patient Registry Advisory Council will give input on usability and content, as well as outreach language as we engage and inform registry participants.
Roles and Responsibilities
- Attend at least 75% of quarterly meetings.
- Register for the VeDA Patient Registry and complete all surveys.
- Actively participate in discussions via online conference calls and email.