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Update My Information
The ANA is dedicated to empowering patients to take an active role in their care by creating impactful programs, funding research, and collaborating with top medical centers and leading healthcare providers - supporting you along every step of your AN journey.
Our commitment includes a robust lineup of support group meetings, webinars, and educational events, plus our quarterly NOTES newsletter, featuring insights on treatment options, regrowth, hearing and balance issues, managing headaches, and navigating the “Watch and Wait” approach.
Please take a moment to ensure we have your most up-to-date information, so you’ll have access to these critical resources.
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I am an observation patient, how will I know when it's time to seek treatment?
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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.
Sincerely,
Cameron C. Wick, MD
Associate Professor | Otology & Neurotology
Department of Otolaryngology – Head & Neck Surgery
Washington University School of Medicine
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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 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.
