A patient registry is a database of health information that helps describe the patient experience to better inform researchers and the medical community so that improvements can be made to the diagnostic and treatment process. The registry is created by patients who provide answers on the survey.
Every addition to this registry helps to amplify the voice of acoustic neuroma patients to optimize the search for answers about treatment, causation, and quality of life issues. When you take the survey, you are empowered to share your AN experience with a global disease community.
Upon completing the survey, you will be able to view the responses of other acoustic neuroma patients (all data is aggregated and deidentified).
Acoustic neuromas, also known as vestibular schwannomas, are rare. Because of this, there is a lack of research about them, and the people who have them. By sharing information about your acoustic neuroma journey, you can help the whole acoustic neuroma community. Your participation may help in encouraging research studies or speeding therapies while rapidly increasing our understanding of the issues surrounding acoustic neuromas. Creating a shared network that collects experiences directly from patients is an opportunity to build one central and international network of information on acoustic neuroma.
Your data is safeguarded and de-identified which makes it possible to share it with patients, researchers and drug developers working to help find new and better treatments for disease. Another big benefit is that data is shared with patients so you learn how other participants are managing similar health challenges. As a participant you can select whether or not to share your data with medical professionals performing research.