Opportunities to participate in research to find answers for voice disorders
Researchers need you! By participating in clinical research trials you are helping us to learn more about the cause of, treatment for, and hopefully a cure for spasmodic dysphonia and related voice disorders. Researchers share information about current trials and you can also check clinicaltrials.gov for more information.
VIRTUAL | Staying Connected Through Communication Study
This study is sponsored by the SPEAC LAB of the University of Washington. The purpose of this online survey study is to hear about communication between:
People living with spasmodic dysphonia (SD), also known as laryngeal dystonia; and
Their family members, friends, and / or coworkers
Your participation will help healthcare providers support both people with SD and the important people in their lives in staying connected through communication.
Each participant will receive a $25 check at the end of the survey.
Participants
You may be eligible to participate in this survey study if you:
Are over 18 and have been diagnosed with spasmodic dysphonia
Have at least one family member, friend, or coworker who can also answer survey questions
Details
Open to any location in the United States
The study can be done online
Your participation should take 30–45 minutes
Your family/friends/coworkers will participate SEPARATELY from you. It will take them 20-30 minutes
For questions, contact speaclab@uw.edu or 206-221-3563
To Get Started Visit: https://sites.uw.edu/speaclab/staying-connected-study/spasmodic-dysphonia/
SCOTTSDALE, AZ | Connected Speech Voice Research Study
Connected Speech Voice Research Study
Purpose: To measure vocal fold vibration during connected speech
To participate: You must be at least 18 years old and have one of the following diagnoses with no recent treatment:
1) Unilateral vocal fold paralysis
2) Spasmodic dysphonia
3) Tremor
4) Normal Voice
The study includes:
• Exam of how your vocal folds vibrate while speaking using flexible scope
• Voice Recording
Benefits of participating:
• See your vocal folds vibrate
• Earn $100
Where: Mayo Clinic – Scottsdale, Shea Blvd,
How long: Approximately 1 hour of your time (1 visit)
An Institutional Review Board responsible for human subjects research at Mayo Clinic determined this research project is acceptable according to applicable state and federal regulations and Hospital policies designed to protect the rights and welfare of participants in research.
For more information or to sign up, please contact Dr. Stephanie Cotton Zacharias
Email: Zacharias.stephanie@mayo.edu
NEW HAVEN, CT | Use of Transcranial Direct Current Stimulation (tDCS) for Treatment for Spasmodic Dysphonia
Investigators at Haskins Laboratory are looking for participants for a research pilot study to investigate the effects of non-invasive brain stimulation on the vocal symptoms of Spasmodic Dysphonia,
If you participate, you will be asked to take part in two Magnetic Resonance Imaging (MRI) sessions, approximately 3 weeks apart, and multiple testing sessions over a two-week period (3 times each week) in order to evaluate the effects of transcranial direct current stimulation (tDCS) on the vocal symptoms of SD. The MRI data will be acquired at the Yale University Magnetic Resonance Research Center and the behavioral testing will take place at Haskins Laboratories, New Haven, Connecticut, USA.
For more information, please contact:
Nabin Koirala
nabin.koirala@yale.edu
INDIANAPOLIS, IN | Deep Brain Stimulation for Spasmodic Dysphonia / Laryngeal dystonia
Researchers at the Indiana University, Departments of Otolaryngology Head and Neck Surgery, Neurosurgery, Neurology, and Speech, Language and Hearing Sciences are conducting research studying the usefulness of deep brain stimulation for treatment of adductor spasmodic dysphonia. The goal of this research is to study the vocal fold movement patterns of voice disorder and overall voice quality, before, during, and after deep brain stimulation surgery. Information from this study will help us better evaluate and treat patients with adductor spasmodic dysphonia.
Adults may be able to participate if they are:
• 18-70 years old;
• diagnosed with adductor spasmodic dysphonia or adductor spasmodic dysphonia with tremor;
• native speakers of American English;
• right-handed.
And do not have:
• cardiac or other implants;
• a history of stroke, brain surgery, or voice surgery;
• other voice problems.
The study will require multiple visits. Study participants will receive compensation for participating in the study. The study will take place at the IU Health Methodist Hospital in Indianapolis, Indiana.
Contact:
Rita R. Patel, Ph.D.
812-855-3886
patelrir@iu.edu
BOSTON, MA | New Objective Measures and Treatments for Sensorimotor Disorders of Voice and Speech
The STEPP LAB conducts research in order to find new objective measures and treatments for sensorimotor disorders of voice and speech.
We are seeking adults aged 18-100 with a voice disorder related to vocal hyperfunction (muscle tension dysphonia, vocal nodules, vocal fold polyp) or adductor spasmodic dysphonia/laryngeal dystonia to participate in research studies.
Participants will be asked to come in for one to four sessions no longer than three hours each. Compensation is $20/hr.
You may be asked to:
Produce speech
Complete self-rating scales
Listen to and rate speech samples
Data that may be collected:
Acoustics using a microphone
Flexible endoscopy to observe movements of speech structures
If you are interested in participating in this study or would like information regarding other studies you may qualify for, you may call 617-358-1395 or email stepplab@gmail.com.
The STEPP LAB for Sensorimotor Rehabilitation Engineering is part of the Speech, Language & Hearing Sciences Department at Boston University College of Health & Rehabilitation: Sargent College.
BOSTON, MA | Brain-Computer Interfaces for the Treatment of Laryngeal Dystonia
For Patients with laryngeal dystonia (spasmodic dysphonia)
We are conducting a randomized, sham-controlled, parallel design, phase 1 clinical trial (NCT04421365) to assess the feasibility and efficacy of novel neurofeedback brain-computer interface (BCI) treatment in patients with laryngeal dystonia. You are invited to participate in this clinical trial if you have laryngeal dystonia. This study includes the therapeutic BCI intervention, an MRI of the brain, a completion of clinical and behavioral assessments. Funding for this study is provided by the National Institute on Deafness and Other Communications Disorders (NIDCD), National Institutes of Health (NIH), R01DC019353 grant. All research procedures have been reviewed and approved by the Institutional Review Board (IRB) of Mass General Brigham.
To obtain detailed information about the study and your eligibility for participation, please contact us by phone (617) 573-6016 or e-mail Simonyan_Lab@meei.harvard.edu. The preliminary screening will take approximately 20 minutes of your time. If you are eligible for the study participation, we will schedule your visit with our research team at your convenience. Upon the study completion, your out-of-town and/or local travel expenses associated with the study participation will be reimbursed, and you will receive a compensation for your time and efforts.
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BOSTON, MA | Imaging Genetics of Laryngeal Dystonia
Recruiting:
Patients with a familial form of laryngeal dystonia
Unaffected relatives of patients with laryngeal dystonia
Patients with voice tremor
Patients with muscle tension dysphonia
We are conducting a series of studies to understand the brain and genetic mechanisms of developing laryngeal dystonia and other related disorders (voice tremor and muscle tension dysphonia), which will help identify the neural markers that determine the predictive risk of developing these disorders. You are invited to participate in this study if you have laryngeal dystonia, voice tremor, muscle tension dysphonia or are an unaffected relative of a patient with laryngeal dystonia. This study includes the an MRI of the brain, a completion of clinical and behavioral assessments, and a blood draw for genetic studies. Funding for this study is provided by the National Institute on Deafness and Other Communications Disorders (NIDCD), National Institutes of Health (NIH), R01DC011805 grant. All research procedures have been reviewed and approved by the Institutional Review Board (IRB) of Mass General Brigham.
To obtain detailed information about the study and your eligibility for participation, please contact us by phone (617) 573-6016 or e-mail Simonyan_Lab@meei.harvard.edu. The preliminary screening will take approximately 20 minutes of your time. If you are eligible for the study participation, we will schedule your visit with our research team at your convenience. Upon the study completion, your out-of-town and/or local travel expenses associated with the study participation will be reimbursed, and you will receive a compensation for your time and efforts.
BOSTON, MA | Understanding Disorder-Specific Neural Pathophysiology in Laryngeal Dystonia and Voice Tremor
Recruiting:
Patients with laryngeal dystonia
Patients with voice tremor
Healthy volunteers
We are conducting studies to better understand the brain alterations in laryngeal dystonia and voice tremor. You are invited to participate in this study if you have laryngeal dystonia, voice tremor, or are a healthy volunteer. This study includes the an MRI and EEG of the brain, a completion of clinical and behavioral assessments, and a blood draw for genetic studies. Funding for this study is provided by the National Institute on Deafness and Other Communications Disorders (NIDCD), National Institutes of Health (NIH), P50DC019900 grant. All research procedures have been reviewed and approved by the Institutional Review Board (IRB) of Mass General Brigham.
To obtain detailed information about the study and your eligibility for participation, please contact us by phone (617) 573-6016 or e-mail Simonyan_Lab@meei.harvard.edu. The preliminary screening will take approximately 20 minutes of your time. If you are eligible for the study participation, we will schedule your visit with our research team at your convenience. Upon the study completion, your out-of-town and/or local travel expenses associated with the study participation will be reimbursed, and you will receive a compensation for your time and efforts.
BOSTON, MA | Multimodal Assessment of Neurophysiology in Laryngeal Dystonia (Spasmodic Dysphonia)
The Brain Recovery Lab at MGH Institute of Health Professions looking for people with laryngeal dystonia to be a part of a research study that is investigating the safety and effectiveness of repetitive transcranial magnetic stimulation (rTMS) as an intervention for adults with laryngeal dystonia. Dystonia is associated with abnormal activity in the brain, specifically increased excitability in the motor region of the brain. rTMS is a safe and painless procedure that has been shown to regulate excitability by increasing inhibition in the brain.
This study will occur in two phases, one where you will receive the intervention and one where study staff will go through the motions of rTMS procedure but you will not receive the intervention (control).
If you are interested in participating in the study, you will be asked to make visits to the MGH Voice Center for approximately 2 hours every day for 5 days (Phase 1), and then return 3 months later for 5 more 2 hour sessions (Phase 2). You will be paid $500 (additional travel coverage might be provided).
Requirements:
• No history of seizure in the past 2 years
• Age 21-75
• Symptoms of laryngeal dystonia (spasmodic dysphonia) or healthy person without dystonia
For more infomration, please contact: Dr. Teresa Kimberley at the Brain Recovery Lab at 617-643-6564 or BrainRecoveryLab@mghihp.edu
AUSTIN, TX | Auditory-Motor Control of Voice in Individuals with Essential Vocal Tremor
Researchers in the Voice Lab at The University of Texas at Austin invite individuals with essential tremor to participate in a study of voice. The goals of the study are to understand how speakers control their voice and to develop therapy that improves vocal control. Participants will complete hearing tests, cognitive tests, and voice recordings while they perform different speaking tasks. Nasolaryngoscopy may also be performed. Please see the study flyer for details.
Researchers in the Voice Lab at The University of Texas at Austin invite healthy speakers to participate in a study of voice. The goals of the study are to understand how speakers control their voice and to develop therapy that improves vocal control. Participants will complete hearing tests, cognitive tests, and voice recordings while they perform different speaking tasks. Please see the study flyer for details.
SALT LAKE CITY, UT | Sensory Trick Study
PURPOSE OF THE STUDY?
This study will investigate how vibrotactile sensory conditions affect symptoms of individuals with a specific voice disorder called laryngeal dystonia (or spasmodic dysphonia).
WHO IS NEEDED?
Volunteers ages 18+ years of age diagnosed with laryngeal dystonia (or spasmodic dysphonia).
WHAT WILL VOLUNTEERS DO?
Volunteers will take part in 1 study visit consisting of the following:
- 1-hour voice evaluation (if applicable) and
- 1-hour experimental session with voice recordings of speaking tasks under vibrotactile sensory conditions
Compensation is provided for time and effort.
IF INTERESTED, CONTACT: Kaitlyn Dwenger
kaitlyn.dwenger@utah.edu; 801-213-7315
WHITEWATER, WI | Sensory Interaction in Voice Disorders and Laryngeal Somatosensory Evoked Cortical Potentials in Spasmodic Dysphonia
PURPOSE: We are interested in the sensory (feeling) and brain systems that contribute to the voice interruptions experienced by individuals with Spasmodic Dysphonia. We are also examining how these systems respond to treatment. Our goal is to improve the precision of assessment and targeted treatment for individuals with Spasmodic Dysphonia.
HOW CAN YOU HELP? We are recruiting individuals with Spasmodic Dysphonia. We also welcome individuals without SD for comparison. Your participation includes tests of brain function, clinical testing of speech and voice function, and clinical testing of laryngeal sensory function (voice box feeling). Your participation is voluntary. There is no cost to participate. Payment for participation is $100 per session. Additional funds are available for travel and lodging expenses.
PLEASE CONTACT:
Airway Sensory Physiology Laboratory
Dr. Michael Hammer
University of Wisconsin – Whitewater, Whitewater, WI
E-Mail: UWWAirwayLabS@gmail.com
Other Ways to Participate in Research
Global Dystonia Registry
The Dysphonia International is proud to be part of the first-ever patient registry devoted to focal dystonias. The Registry is designed to collect data on persons affected by a focal dystonia(s), including spasmodic dysphonia, to assist in future research efforts and clinical trials. The goal of the Global Dystonia Registry is to support future dystonia studies, including clinical and research trials, through the collection of data on persons affected by dystonia. Although the focal dystonias have many different manifestations, most experts believe they share a common pathogenesis or mechanism that causes the disorder. The common causes may be a similar gene defect, similar lifetime experiences, or both. Collecting information from different patient populations may help us identify the common features that they may share. This Registry compliments the current scope of research for the Dystonia Coalition, a National Institutes of Health supported clinical research effort.
Dystonia Brain Collective
Dysphonia International, working with other dystonia patient organizations of the Dystonia Brain Collective, is proud to partner with the Harvard Brain Tissue Resource Center to help solve the mystery of spasmodic dysphonia and other dystonias through brain donation. The Harvard Brain Tissue Resource Center is responsible for collecting, preserving, and distributing human tissue to qualified scientific investigators who are conducting important spasmodic dysphonia research.
Dystonia Coalition
The Dystonia Coalition is a collaboration of medical researchers and patient advocacy groups that is working to advance the pace of clinical and translational research in the dystonias to find better treatments.
Information on research studies is shared to further the scientific understanding of these voice disorder, but we do not endorse or recommend participation in this or any other medical research studies.