ANA Patient Registry
IMPORTANT - DON'T FORGET!
UPDATE YOUR ACOUSTIC NEUROMA PATIENT REGISTRY INFORMATION EVERY YEAR
Take these two simple steps:
1. Add coordinator@pin.invitae.com to your email address book so that important reminders do not go to your spam folder. You will receive an annual reminder at the email address you used to register and participate in the registry.
2. If you think you missed a reminder, visit Invitae to update your AN information. When you login, you will see the date of your last update. Please provide updates each year.
Why is it important to update your information each year?
Updating your information annually helps us create a database of patient history over time. This allows researchers to look at changes over time, or longitudinally. Researchers can look at how certain things may change at different points in life and explore some of the reasons why these developmental shifts take place.
WHAT is a patient registry?
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.
WHO can participate?
The ANA Patient Registry is for ALL AN patients (even if you have taken the ANA Survey in the past).
HOW do I participate?
The link above will take you to the Invitae website, our partner in creating the registry.
1.Create a LOGIN and PASSWORD on Invitae and then register to participate in the ANA Patient Registry. Invitae will not recognize your ANA membership login or password.
2. After you participate in the registry, you will be able to view other patients’ responses. All responses are de-identified and aggregated - you will not be able to see personal information, and others will not be able to see yours.
3. Take the other four surveys: Diagnosis, General Health, Family History and Medical Care. You can leave the Invitae website and return to complete the surveys at a later time if necessary.
WHY should I participate in the registry?
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).
WHY is a patient registry important?
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 experience, 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.
HOW will my data be used?
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.
Thank you for helping the acoustic neuroma community. If you need assistance, please contact us.
**ANA is grateful to Edward H. Richard and the Edward H. Richard Foundation for a special grant for the promotion and marketing of the ANA Patient Registry.
