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

Dr. Elizabeth B. Claus from Yale University launched the collection of data from acoustic neuroma patients at our National Symposium in Los Angeles to initiate the first AN causation research study of this type. The goal of the study is to determine whether or not there are possible genetic risk factors that cause an AN.

The first phase of the study is only the ongoing collection of data, which includes an online questionnaire and a saliva sample from acoustic neuroma patients. There is currently no funding for phase II of this study. 

 

ANA has awarded a grant to Yale University to assist
in the funding for this first phase of data collection.

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The Yale University Acoustic Neuroma Study

What is an acoustic neuroma?
An Acoustic Neuroma (or Vestibular Schwannoma) is a tumor of the lining of the nerve that controls hearing and balance.

What is the goal of the study?
Little is known about risk factors for acoustic neuroma. The purpose of this study is to discover why some people develop acoustic neuroma while other people do not.

Who is organizing the study?
The study is organized by Dr. Elizabeth B. Claus from Yale University.

Who can enter the study?
Any person over the age of 20 years with a diagnosis of acoustic neuroma.

What are study participants asked to do?
There are two parts to being a study participant: 

  1. An online questionnaire with questions on medical and family history, and 
  2. A saliva sample that will permit us to look at changes in DNA. If you allow us, we will also review your tissue specimens and MRI scans of your acoustic neuroma.

May I contact the study to get more information?
You may call us (collect) at 203-764-8422 or email the study at This email address is being protected from spambots. You need JavaScript enabled to view it.

You may also visit http://medicine.yale.edu/ysph/people/elizabeth_claus.profile to learn more about the principal investigator for the study.

To participate in the study, complete the online questionnaire.

NOTE:
Important: If you have started the study, please make sure that you provide all necessary components of the study noted below:

  • Online questionnaire
  • Send to Yale
    • Saliva specimen
    • Signed Consent Form to obtain a saliva specimen
    • Pathology or MRI Report to confirm eligibility
    • Signed Consent Form to obtain medical records

For Additional Information about the Yale University Acoustic Neuroma Study, please watch the educational webinar. 

Webinar - Yale University Acoustic Neuroma Study - What Does It Mean To Me?
Elizabeth Claus, PhD, MD
February 24, 2015

 

What is the purpose of this study? The study is designed to investigate treatment outcomes in patients with large acoustic neuromas. Large acoustic neuromas tend to compress the brainstem and the facial nerve and in most cases the tumor is tightly adherent to these structures. In such circumstances it is not possible to remove the entire tumor during surgery as it may cause facial paralysis or brainstem complications. It has become a standard of practice for surgeons to remove all (called total resection), about 99% by volume (called near-total resection), or between 80-99% by volume (called subtotal resection) of these tumors depending on tumor characteristics encountered in the operating room. After surgery patients are monitored using MRI scans to make sure the residual tumor does not grow. If the residual tumor shows signs of growth patients receive stereotactic radiation therapy such as Cyberknife or Gammaknife. The potential advantage of leaving small residual tumor would be less chance of facial paralysis and other complications. However, this may come at the expense of residual tumor growth in future. It is our goal to investigate if one can optimize removal of the tumor and preserve excellent facial nerve function without increasing possibility of tumor growth and need for further treatment in future.

Who qualifies to participate? Patients with large acoustic neuromas (measuring 2.5 cm in the widest diameter in cerebellopontine angle) who have never received prior treatment. 

What Centers are participating in the study?

  • Stanford University, Palo Alto California (Robert Jackler, MD; Nikolas Blevins, MD; John Oghalai, MD)
  • George Washington University, Washington DC (Ashkan Monfared, MD)
  • Weill Cornell University, New York (Samuel Selesnick, MD)
  • University of Iowa, Iowa city (Bruce Gantz, MD; Marlan Hansen, MD)
  • University of Texas Southwestern, Dallas (Walter Kutz, MD; Brandon Isaacson, MD)
  • Louisiana State University, Baton Rouge and New Orleans (Moises Arriaga, MD)
  • Indiana University, Indianapolis (Rick Nelson, MD)
  • University of Cincinnati in Ohio and Baylor College of Medicine in Houston are no longer accepting new patients.

Does participating in the study affect what type of treatment options I may have? No, this study is purely a data-collection study and does not, in any way, affect your treatment.

Would the study cover the cost of treatment?  No, participants are responsible for the cost of their own treatment which is usually covered by their insurance provider.

Are there any additional costs or financial benefits to participate in the study?  No, there will be no additional cost to you or your insurance companies nor any financial rewards because of participating in the study.

Are there any additional risks associated with participating in the study? Participating in the study simply allows the investigators at each institution to follow your progress over the years. There are obviously risks associated with treatment of large acoustic neuromas irrespective of participation in the current study. The data collected at each institution is forwarded to the coordinating Center in an anonymous fashion without containing any names or other personal information. Each participating institution will provide you with a consent form which delineates the details of the study. 

What are my obligations if I agree to participate?  There are no additional obligations to participate in the study besides what is required for treatment and follow-up of these tumors. You may be asked to fill out a short questionnaire during your visits. There is no cost to you, and you can withdraw or decline to participate at any time. Your decision to participate does not in any way affect your relationship with the Acoustic Neuroma Association®(ANA), and no funding from the ANA is being used to complete this study. Your personal information is never shared.

What if I have other questions? More detail about the study is listed on US National Institute of Health Clinical Trial website. You may also email Dr. Monfared at This email address is being protected from spambots. You need JavaScript enabled to view it.

How do I participate? If you are able to receive your treatment at any of the participating Centers, please contact Dr. Monfared to put you in touch with that Center’s coordinator.

Thank you for helping future generations of acoustic neuroma patients by participating in our study,

Ashkan Monfared, MD

Associate Professor of Surgery and Neurosurgery
George Washington University Medical Faculty Associates

Logos for the participating centers:

Baylor 
Cincinnati
 GeorgeWashington
Indiana
 Iowa2
 LSU

Stanford

 UTSouthwestern
 WeillCornell
 

Resiliency for NF Study

A research project to enhance stress and symptom management

Are you feeling stressed?
Are your NF symptoms bothersome?


The Family Center for Neurofibromatosis and the Integrated Brain Health Clinical and Research Program (IBHCRP) at the Massachusetts General Hospital are conducting a research study to compare 2 programs that teach stress and symptom management skills for adults with NF1, NF2, or schwannomatosis. The Department of Defense is paying for this study.

What does the study involve?

  • 8 group sessions led by an MGH psychologist with expertise in NF.
  • Completion of questionnaires on your own computer at the beginning, end, 6 months and 12 months after the sessions.
  • All sessions will take place from your home, using Vidyo, a secure software program you can use with a computer and a webcam to have live videoconferences, that we will help you install for free.
  • Sessions are 1.5 hours long and held once a week.
  • This study DOES NOT involve taking medication.
  • This study DOES NOT involve travel to MGH.

Who can participate?

  • We are looking for people ages 18 and older who have a diagnosis of neurofibromatosis 1 (NF1), neurofibromatosis 2 (NF2), or schwannomatosis.

What are the benefits?

  • If you participate in this research study, you will learn stress and symptom management skills that you can continue to use after the study. You will also interact with other adults with NF like yourself.
  • There is no cost to participate in this study and your decision to participate will not affect your medical care.

How do I join?

Thank you for considering our research study!
You will be helping us gather important information about a training that may help other patients in the future.

Resiliency for NF Study A research project to enhance stress and symptom management Partners Human Research Committee APPROVAL Effective Date 8/23/2017

 

 

 

 

https://ci-redcap.hs.uci.edu/surveys/?s=C8F749XXXD

 

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Speech and Communication in Patients with Facial Paralysis

The goal of this research study is to describe the impact of facial paralysis on oral communication. Surprisingly, there has been little research to date that has measured the effect of facial paralysis or facial weakness on how people verbally communicate.  This ten-minute, anonymous online survey will help doctors and researchers understand more about the connection between facial paralysis and communication.  This study is led by Dr. Jon-Paul Pepper, a facial nerve surgeon at the University of Southern California.

For more information and to complete the online survey, please click or copy the following link into your web browser:

https://redcap.sc-ctsi.org/surveys/?s=7M9CN87AHL

Dr Pepper