Acoustic Neuroma Association
600 Peachtree Parkway
Suite 108
Cumming, GA 30041

I am an observation patient, how will I know when it's time to seek treatment?

 

UMiami

Washington University Quality of Life Comparison Study

At Washington University, with the support of the Acoustic Neuroma Association, we are conducting a study to compare two different quality of life (QoL) surveys. Our goals are to:
1) to better understand patient experience after a vestibular schwannoma diagnosis and/or treatment,
2) to see how different QoL surveys compare in their measurements of patient experience.
We invite you to participate in this study by completing the online survey.

Your responses will be confidential.

There is no cost or appointment necessary to participate.

To complete the survey, you can enter the web address listed below or scan the QR code using a smartphone camera. The survey takes approximately 20-30 minutes to complete. Questions may appear similar because there is some overlap between the two surveys.

If you would like to learn more about this research study or have questions about your participation, feel free to contact us at (314) 273-1589 and indicate that you are calling about the vestibular schwannoma quality of life study. We greatly appreciate your participation and hope that it will improve future care for patients with vestibular schwannomas.

https://redcap.link/WashUQOL

WUSTLQR

 

Sincerely,

Cameron C. Wick, MD
Associate Professor | Otology & Neurotology
Department of Otolaryngology – Head & Neck Surgery
Washington University School of Medicine

UMiami

A Patient Needs-Based Assessment In The Management Of Vestibular Schwannoma (Acoustic Neuroma)

What is the purpose of this study? The goal of this study is to better understand what information helps individuals with vestibular schwannomas or acoustic neuromas make treatment decisions. These treatment decisions include observation, radiation, and surgery. We hope to use this information to improve the information individuals with vestibular schwannomas or acoustic neuromas receive when selecting a treatment method.

How is this study being completed? The study is being conducted online via Zoom. One interview will be completed with a research team member that will include questions related to your knowledge of vestibular schwannomas or acoustic neuromas, your experience seeking care for your vestibular schwannoma or acoustic neuroma, and your needs and feelings about your vestibular schwannoma or acoustic neuroma care. The interview is expected to last approximately 30 to 60 minutes.

How will I participate? Your participation will include scheduling a Zoom meeting and answering questions about your vestibular schwannoma or acoustic neuroma care. You can skip over questions or withdraw at any time. Your responses and the interview will be confidential.

How do I know if I qualify to participate? We ask that you meet the following criteria:

  • Be fluent in English
  • Received a diagnosis of a unilateral (one-side) vestibular schwannoma or acoustic neuroma no earlier than January 2020
  • Were between 45-74 years of age at the time of diagnosis
  • Received treatment (observation / monitoring, radiation, and / or surgery) for a vestibular schwannoma or acoustic neuroma in the United States of America
  • Treatment was provided by an otolaryngologist (including neurotology), oncologist (including radiation oncology), and / or a neurosurgeon.

What if I have questions? If you have questions about the study, including eligibility, please email Eric Martinez at mart5849@pacificu.edu

How can I get started in the study? Email Eric Martinez at mart5849@pacificu.edu to indicate your interest in the study. Please include your preferred email address.

Pacific University, College of Education
Faculty Primary Investigator: Andrew Saultz, Ph.D., Interim Dean
email: Andrew.Saultz@pacificu.edu

This study has received approval from Pacific University’s Human Subjects Research Ethics Committee.

The investigator(s) will be happy to answer any questions you may have at any time during the course of the study. If you are not satisfied with the answers you receive, please call the Pacific University Institutional Review Board at 503.352.1478 to discuss your questions or concerns further. You may also email the Pacific University Institutional Review Board at irb@contact.pacificu.edu. If you have questions about your rights as a research subject, or if you experience a research-related injury of any kind, please contact the investigator(s) and/or the IRB office. All concerns and questions will be kept in confidence.

Pacific University IRB 0004173 FWA 00007392 Reference 031-24 Approved April 23, 2024 Expires April 23, 2029

UMiami

Understanding Barriers to Vestibular Rehabilitation Therapy

Who Can Participate: Adults between the ages of 18 - 70 that have been diagnosed with vestibular dysfunction and have been recommended vestibular rehabilitation therapy in the past.

Study Purpose: The purpose of this study is to identify barriers that have influenced the successful completion of vestibular therapy treatment. Participation in this study will take about 15 minutes. Following consent, participants will be asked to complete a questionnaire that includes information about their vestibular diagnosis and symptoms, demographic information (such as race and ethnicity), and questions about vestibular rehabilitation. There are no foreseeable risks or benefits to participating in this study except discomfort when answering some of the questions, but responses may help us understand how to treat these conditions more appropriately in the future. There is no cost to you, nor is there compensation for completion.

Total number of participants: We are collecting up to n=200 responses for this preliminary study.

Enrollment dates: Open until 30 MAR 2024, or until the total responses have been met.

Study Contact Information: If you have questions for one of the researchers conducting this study, you may contact Erin Williams, MSBE, CCRP (erin.williams@miami.edu) or Devin Kennedy, BS (djk157@med.miami.edu). If you have questions regarding your rights as a research participant, you may contact the University of Miami, Human Subject Research Office at (305) 243-3195. 

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