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.
SALT LAKE CITY, UT | Evaluation of the Contribution of Sensory Tricks to Changes in Symptomatology in Individuals with Laryngeal Dystonia in Comparison to Individuals with Essential Vocal Tremor and Muscle Tension Dysphonia
The Unversity of Utah is conducting a study that will investigate how different sensory conditions affect symptoms of individuals with a specific voice disorder known as laryngeal dystonia (spasmodic dysphonia) for comparison to individuals with essential vocal tremor and normal controls.
WHO IS NEEDED? | Volunteers ages 18+ years of age diagnosed with either laryngeal dystonia (or spasmodic dysphonia), essential tremor with co-occurring vocal tremor, or those without a voice disorder.
WHAT WILL VOLUNTEERS DO? | Volunteers will take part in 2 study visits:
o Hearing screening/Voice evaluation (1 hour)
o Experimental recordings of speaking tasks under various conditions (1.5 hours)
o 1-week follow-up audio recordings (15 minutes)
Compensation is provided for time and effort.
IF INTERESTED, CONTACT: Kaitlyn Dwenger | email@example.com
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 seeking adults aged 18-100 with a voice disorder related to vocal hyperfunction (muscle tension dysphonia, vocal nodules, vocal fold polyp) or to spasmodic dysphonia 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:
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 firstname.lastname@example.org.
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 | Central Mechanisms and Treatment Response of Sodium Oxybate in Spasmodic Dysphonia and Voice Tremor
This study aims to determine the central mechanisms underlying symptom improvement following the use of sodium oxybate (Xyrem), a possible novel oral medication for the treatment of spasmodic dysphonia and voice tremor. You are invited to participate in this study if you have spasmodic dysphonia with or without voice tremor. This study includes the intake of the investigational drug (sodium oxybate) and MRI of the brain before and after drug administration. The study is conducted at Massachusetts Eye and Ear and the Martinos Center for Biomedical Imaging. The study will include an MRI scan of your brain and a blood draw for genetic testing. Funding for this study is provided by the National Institute on Deafness and Other Communications Disorders (NIDCD), National Institutes of Health (NIH), R01DC012545 grant. All research procedures have been reviewed and approved by the Institutional Review Board (IRB) of Massachusetts Eye and Ear Infirmary, Human Subject Committee.
BOSTON, MA | Imaging Genetics of Spasmodic Dysphonia
The contribution of genetic risk factors to the development of focal dystonias is evident. However, understanding of how variations in the causative gene expression lead to variations in brain abnormalities in different phenotypes of dystonia (e.g., familial, sporadic) remains limited. The research program of the investigators is set to determine the relationship between brain changes and genetic risk factors in spasmodic dysphonia (or laryngeal dystonia). The researchers use a novel approach of combined imaging genetics, next-generation DNA sequencing, and clinico-behavioral testing. The use of a cross-disciplinary approach as a tool for discovery of the mediating neural mechanisms that bridge the gap from DNA sequence to pathophysiology of dystonia holds a promise for the understanding of the mechanistic aspects of brain function affected by risk gene variants, which can be used reliably for discovery of associated genes and neural integrity markers for this disorder. The expected outcome of this study may lead to better clinical management of this disorder, including its improved detection, accurate diagnosis, and assessment of the risk to develop spasmodic dysphonia in family members.
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).
• 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
MINNEAPOLIS, MN | Laryngeal Vibration for Spasmodic Dysphonia (SD-VTS)
The general aim of the research is to provide scientific evidence that VTS represents a non-invasive form of neuromodulation that can induce measurable improvements in the speech of SD patients. This research addresses a clinical need to develop alternative or auxiliary treatments for a rare voice disorder with limited treatment options. A successful completion of the proposed work will be an important step in advancing laryngeal VTS as a therapeutic intervention for improving the voice symptoms in SD. Specifically, the scientific yield by achieving the specific aims is threefold: First, it will elucidate the unknown neurophysiological mechanism behind laryngeal VTS by documenting the neural changes associated with VTS. Second, it will establish that VTS can improve voice quality in SD. Third, by documenting that laryngeal VTS yields long-term benefits on voice quality in SD patients, it would provide a solid basis for a clinical trial that needs to address open questions on optimal dosage and duration of VTS-based voice therapy, the magnitude of the therapeutic effect across adductor and abductor SD and its long term efficacy.
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.
Airway Sensory Physiology Laboratory
Dr. Michael Hammer
University of Wisconsin – Whitewater, Whitewater, WI
ONLINE | QUESTIONNAIRE ON CHALLENGES OF LIVING WITH SPASMODIC DYSPHONIA
As part of a project of the Dystonia Coalition, researchers are currently collecting data from patients with spasmodic dysphonia (also known as laryngeal dystonia). The goal of this questionnaire is to create a list of questions that can be troublesome for people living with this voice conditions. Topics include impact on activities, symptoms, and quality of life.
Our goal: To gather data that will be essential for developing future novel treatments for spasmodic dysphonia and other types of dystonia.
How we are doing it: By learning more about the symptoms and activities that can be troublesome for people with spasmodic dysphonia, understanding which aspects of this condition are most relevant to you, and identifying which aspects of this condition you would most want to see a treatment for.
How you can help: By filling out this survey! As we develop tools to gather this information, feedback from patients like you is essential. This survey can be accessed by clicking this link https://www.surveymonkey.com/r/VDC5VVB or pasting it into your preferred search engine. The survey will be open until December 31, 2021.
The survey has 14 questions should less than 10 minutes to complete. Responses are anonymous and participation in this survey is voluntary.
If you have any questions, please contact Research Coordinator Samantha Pentecost at email@example.com
This study is part of a project on Patient-Center Outcomes sponsored by the the Dystonia Coalition. A part of the Rare Diseases Clinical Research Network, the Dystonia Coalition is an international collaboration of medical researchers and patient advocacy groups with a mission to advance the pace of clinical and translational research in the dystonias to find better treatments and a cure.
Other Ways to Participate in Research
Global Dystonia Registry
The NSDA 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
The National Spasmodic Dysphonia Association, working with other 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.
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.