Opportunities to participate in spasmodic dysphonia research to find answers
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.
ONLINE | Uncommon Voice Project
Contribute your voice from the comfort of your home! Researchers at ASU are working to collect a dataset of speech from individuals with voice disorders. If you are interested in your voice being a part of this dataset, please click here or follow the link below to start the ~30-minute speech sample collection process. https://uncommonvoice.org
ABOUT THIS STUDY: At Arizona State University’s Center for Cognitive Ubiquitous Computing, we are fascinated by the ability of a voice to convey so much meaning, and we want to help individuals with voice disorders be better understood by both humans and machines. But in order to create voice systems, a large amount of voice data is necessary.
We support the idea that in order to make the existing speech systems more inclusive of different voices, we need to make data that represents these voice disorders freely available. With this model, any researcher or developer who has an interest in working on projects that make voice recognition systems more inclusive will have access to this dataset of speech samples.
Please note that our data collection system works best when accessed from a desktop, laptop, or Android device. Unfortunately, we are not able to support collecting data from an iOS device (iPhone or iPad). We hope to support iOS devices in the future.
While we expect the data collection to take around 30 minutes, if you have to stop in the middle of collecting the data, that’s perfectly fine, we’ll save your place. You can log back in whenever you’re ready and finish the data collection process.
For more information, watch our introduction video here. If you have any questions, please email email@example.com.
We really appreciate your participation and support.
CONTACT: Meredith Moore
Center for Cognitive Ubiquitous ComputingArizona State University | PhD Candidate
firstname.lastname@example.org | email@example.com
ONLINE | Current Demographics of Individuals with Spasmodic Dysphonia
The Chicago Institute for Voice Care at the University of Illinois at Chicago is conducting a short 9-question survey on individuals who have been diagnosed with spasmodic dysphonia. The purpose of the survey is to get an up to date demographic view of patients who are diagnosed and/or living with spasmodic dysphonia.
If you have been diagnosed with spasmodic dysphonia The Chicago Institute for Voice Care would appreciate your participation in this survey study. If you decide to participate in the survey, please know that no personal identifiable information about you will be requested or saved as a result of your participation. Your participation in the survey is voluntary and completely anonymous. The survey takes approximately 1 to 2 minutes to complete.
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 Focal Dystonia
The Brain Recovery Lab at the MGH Institute of Health Professions, Boston, MA is conducting a research study titled: Multimodal Assessment of Neurophysiology in Focal Dystonia. The purpose of the study is to use magnetic resonance imaging (MRI) and transcranial magnetic stimulation (TMS) to determine the structure and excitability of the brain between healthy subjects and those diagnosed with laryngeal dystonia or spasmodic dysphonia to gain a better understanding of the cause of the disorder. TMS is a safe, non-invasive, painless procedure which allows researchers to measure the excitability of portions of the brain. A physician will place fine wire electrodes into the vocal cord muscle to monitor activity.
1. Greater than 18 years of age, but we are especially in need of people 55-70 years of age
2. Symptoms of laryngeal dystonia, spasmodic dysphonia or healthy person without dystonia
3. No history of seizure within the last two years
4. Participation includes two sessions lasting 2-3 hrs for each session. At the completion of the study you will be paid $200 (additional travel coverage might be provided)
For more information, please contact at (617) 643-6564 or firstname.lastname@example.org
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
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.
The NSDA provides information on this research study in order to further the scientific understanding of spasmodic dysphonia, but the NSDA does not endorse or recommend participation in this or any other medical research studies.