The new 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 take the Acoustic Neuroma 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 deidentified 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.
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.
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 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.
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.
**ANA is grateful to Edward H. Richard and the Edward H. Richard Foundation for a special grant for the promotion and marketing of the Registry.
Member Portal Overview
By joining ANA, you will have access to several valuable resources including:
Webinar library: past webinars and transcripts of webinars presented by leading acoustic neuroma medical professionals
Newsletter library: back issues of our quarterly NOTES newsletter, which contain medical articles, patient stories and news of interest to the acoustic neuroma community
Patient information booklets:
A Glimpse of the Brain
Headache Associated with Acoustic Neuroma Treatment
Improving Balance Associated with Acoustic Neuroma
Acoustic Neuroma Basic Overview
Hearing Loss - Rehabilitation for Acoustic Neuroma Patients
Eye Care After AN Surgery
Diagnosis Acoustic Neuroma
Facial Nerve and ANA
In a continuing effort to advance our understanding of acoustic neuroma issues, the Acoustic Neuroma Association conducted surveys of acoustic neuroma patients.
We would like to thank all of you who completed the surveys and sincerely hope you will help us continue our efforts to develop a "living database" that will provide valuable information to all existing patients, as well as those who will be diagnosed in the future by participating in our Patient Registry.
Disclaimer - Acoustic Neuroma Medical Research Studies and Trials Listings
The Acoustic Neuroma Association posts information about acoustic neuroma medical studies and trials which may be of interest to acoustic neuroma patients or caregivers. These listings are provided as a convenience only and are not to be considered an endorsement or recommendation by ANA.
All studies and trials listed have IRB or Ethics Committee approval. An Institutional Review Board (IRB) is a committee established to review and approve research involving human subjects. The purpose of the IRB is to ensure that all human subject research be conducted in accordance with all federal, institutional, and ethical guidelines.
Clinical study involves research using human volunteers (also called participants) that is intended to add to medical knowledge. There are two main types of clinical studies: clinical trials (also called interventional studies) and observational studies.
In a clinical trial, participants receive specific interventions according to the research plan or protocol created by the investigators. These interventions may be medical products, such as drugs or devices; procedures; or changes to participants' behavior, such as diet. Clinical trials may compare a new medical approach to a standard one that is already available, to a placebo that contains no active ingredients, or to no intervention. Some clinical trials compare interventions that are already available to each other.
When a new product or approach is being studied, it is not usually known whether it will be helpful, harmful, or no different than available alternatives (including no intervention). The investigators try to determine the safety and efficacy of the intervention by measuring certain outcomes in the participants.
The ANA website provides a brief introduction to studies and trials, with links to the study and contact information. All information is provided by the research organization. AN patients should contact the research organization for more information using the contact information provided.
Massachusetts Eye and Ear Infirmary - New!
Study of Aspirin in Patients with Vestibular Schwannoma
Massachusetts General Hospital
Resiliency for NF Study
University of California, Irvine
Decision Making in Acoustic Neuroma
Treatment outcomes in patients with large acoustic neuromas
Acoustic Neuroma causation research study
Acoustic Neuroma Quality-of-Life Study
The Acoustic Neuroma Association provides the following links to assist in your search for information. These links are provided as a convenience only and are not to be considered an endorsement or recommendation by ANA.
Acoustic Neuroma Association of New Jersey:
- Friends of Man - medical equipment
- Miracle Flights - donated flights
- Partnership for Prescription Assistance
- Rx Assist
- National Institute on Deafness and Other Communication Disorders
- National Institutes of Health on Acoustic Neuroma
- Social Security Disability
- American Tinnitus Association
- American Academy of Audiology
- American Speech-Language-Hearing Association (ASHA)
- Hearing Loss Association of America and Helpful Links
- Alliance of Claims Assistance Professionals (ACAP)
- Center for Medicare Advocacy, Inc.
- Employment Toolkit (HLAA)
- Medicare Rights Center (MRC)
- National Organization of Social Security Claimants' Representatives (NOSSCR)
- Patient Advocate Foundation (PAF)