Details: Published: May 19, 2017

Member Portal Overview

By joining the ANA, you will have access to several valuable resources including:

Peer Mentor List
Q&A with AN Providers: video library
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:

Newly Diagnosed Handbook
Headache Associated with Acoustic Neuroma Treatment
Improving Balance Associated with Acoustic Neuroma
Hearing Loss - Rehabilitation for Acoustic Neuroma Patients
Eye Care After AN Surgery
Facial Nerve and ANA
Understanding Emotional, Cognitive and Behavioral Changes

Details: Published: May 19, 2017

Acoustic Neuroma Medical Studies and Funded Research

ANA Patient Registry
Join our "living database" to help encourage research studies and speeding therapies while rapidly increasing our understanding of the issues surrounding acoustic neuromas.

Online Studies

MUSC & Froedtert MCW
Experiences of Individuals Diagnosed with Vestibular Schwannoma During or Around Pregnancy

Ohio State University
Financial and Dizziness After Treatment Studies

Washington University
Quality of Life Comparison Study

University of Miami
Understanding Barriers to Vestibular Rehabilitation Therapy

UC San Diego
Epidemiological Survey of Acoustic Neuroma: An Identification of Risk Factors in the United States

Mayo Clinic
Acoustic Neuroma Quality-of-Life Study

In-person Studies

Akouos
Anti-VEGF Gene Therapy Trial for Vestibular Schwannoma

Froedtert & Medical College of Wisconsin
Evaluating Pre-Treatment Vestibular Physical Therapy Rehab for Patients with Vestibular Schwannomas (VS PREHAB)

Locations: various facilities across the U.S.
Trial for Treatment Refractory Trigeminal Neuralgia

Locations: various facilities across the U.S.
Study of Aspirin in Patients with Vestibular Schwannoma

*Contact individual research organizations for more information

Disclaimer

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.

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.

Studies and Trials Overview

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.

Find Studies and Trials

Additional Resources

Current Funded Research

Summary of Current Funded Research

2023 FUNDING CYCLE:

$50,000 (over two years) to UCLA Health

To evaluate EMP2’s (a protein-coding gene) expression in primary acoustic neuroma/vestibular schwannoma samples while also aiming to utilize transcriptomic data to correlate the expression of EMP2 with inflammatory, immune, and angiogenic markers. The research will also evaluate the effects of anti-EMP2 treatment in tumorsphere models.

$25,000 to Mayo Clinic

To continue a previously funded research effort to expand the quality-of-life efforts to translate the VSQOL Index to other languages to enhance participation in and reduce the potential of inequitable access to quality-of-life research. Researchers see translation efforts improving the lives of vestibular schwannoma patients in the U.S. and worldwide by increasing inclusivity in research to comprehensively evaluate the impact of a diagnosis of vestibular schwannoma and its treatment on well-being and quality of life.

2022 FUNDING CYCLE:

$25,000 to Mt. Sinai Medical Center
To assess the feasibility of high-field 7-Tesla (7T) MRI to predict facial nerve location, attenuation, and degree of involvement with respect to the vestibular schwannoma using DTI tractography and compare it to published rates for similar studies using lower-strength magnets.

$24,908 to Washington University in St. Louis
To study a cohort of 1,500+ patients with vestibular schwannoma to better define Quality of Life (QOL) relevant to vestibular schwannoma management.

$25,000 to University of California San Diego Health
To profile and compare the genetic characteristics of latent and growing vestibular schwannomas using RNA and whole exome sequencing.

$25,000 to University of California, San Francisco
To develop a mobile app program with machine-learning enhanced capabilities to guide facial therapy.

AUG 2021
Emory University: $21,002
“Circulating Tumor DNA as a Minimally Invasive Biomarker in Patients with Vestibular Schwannoma.”

AUG 2021
UCLA: $14,528 **COMPLETED**
"Epithelial Membrane Protein 2 as a Biomarker and Therapeutic Target for Vestibular Schwannoma."

AUG 2021
Keck School of Medicine, USC: $25,000
"Ultra-high Field 7T Magnetic Resonance Imaging for Predictive Localization of the Facial Nerve in the Presence of Large Vestibular Schwannoma."

AUG 2020
Mayo Clinic: $24,000 **COMPLETED**
“Development and Validation of a New Disease-Specific Quality of Life Index for Sporadic Vestibular Schwannoma.”

MAY 2019
Keck School of Medicine, USC: $25,000 **COMPLETED**
“Single-Cell RNA Transcriptome and DNE Copy Number Variation Sequencing of Vestibular Schwannoma.”

For Researchers

The Acoustic Neuroma Association posts information about medical studies and trials which may be of interest to acoustic neuroma patients or caregivers. If you are interested in adding a research study to our website and discussing ways we can help you recruit participants through our patient base, please contact Melanie Hutchins at volunteers@anausa.org to request information about the ANA’s website listing criteria and fee schedule. Listings can be for online and/or in-person research studies that have obtained IRB approval.

ANA Advancing Research

The ANA has, and continues to build strong relationships within the medical and research community. We partner with experts in the field who share their knowledge and research through our website, social media platforms, and in NOTES, our quarterly newsletter.

The ANA co-sponsors programs at medical centers and with researcher / scientists around the country, hosts in-person patient education conferences, webinars, virtual support group meetings, and Facebook Live events.

In addition, every year we invest in cutting-edge research, providing seed money to top medical centers, doctors, and scientists who are conducting innovative and original research projects. These include studies related to AN causes and quality-of-life issues such as balance, hearing and tinnitus, amongst others.
More information on our Research Grant Program is available here.

If you have any questions, please contact Jim Shea, ANA CEO, at director@anausa.org.

Details: Published: May 19, 2017

ANA Surveys

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 by joining our Patient Registry. This "living database" helps encourage research studies and speeding therapies while rapidly increasing our understanding of the issues surrounding acoustic neuromas.

Care Coordinator Survey Qualitative Research Results

2014 Patient Survey Report