APPLY FOR RESEARCH GRANT
Seed grants help nurture and support research while expanding our understanding of spasmodic dysphonia (SD) and related voice conditions. With these grants, we help investigators gather preliminary data so that they can apply to the National Institutes of Health (NIH) for much larger funding. The significance of these grants has been demonstrated by Dr. Teresa Kimberley’s exploratory study, which has led to a larger-scale research study funded by the National Institute on Deafness and Other Communication Disorders (NIDCD).
Seed grants to new or established investigators will be awarded up to $75,000 per year. These funds may provide partial support for post-doctoral research training relating to these voice conditions. In addition, grants can support career development awards which will provide mentoring for junior researchers so they can learn from experienced, well-published researchers. This grant is open to both clinicians and non-clinicians. There is a rolling deadline so applications may be submitted at any time. Click here to download the grant application.
WE ARE FUNDING RESEARCH INTO:
“We are all approaching the same problem with different techniques,” said Dr. Christopher Honey during the virtual 2021 Virtual Symposium.
- Christopher Honey, MD, DPhil (University of British Columbia) is studying the impact of deep brain stimulation (DBS) on individuals with SD who have received this invasive brain surgery to treat other serious forms of dystonia, tremor, or Parkinson’s disease. After showing effectiveness in a Phase I study, Dr. Honey, working with Dr. Stacey Halum, are continuing this study with the enrollment of additional people. If effective, this treatment could be used for the most extreme cases of SD, which are non-responsive to other treatments.
- Jürgen Konczak, PhD and his team (University of Minnesota) continue to expand the project of testing the effectiveness of vibro-tactile stimulation (VTS) among individuals with adductor and individuals with abductor SD. The team has demonstrated voice improvement in both populations. This non-invasive neuromodulation delivers stimulation directly to the larynx muscle through a collar around the neck. Additional funding provided in 2023 assists with building more units so more people can test it.
- Teresa Kimberley, PhD, (Massachusetts General Hospital (MGH) Institute of Health Professions) is investigating the effects of repetitive transcranial magnetic brain stimulation devices (rTMS) on individuals with abductor SD. Prior research by this team has demonstrated improvement with this treatment on individuals with adductor SD. A coil sits on the head to deliver rTMS for 20 minutes to the motor cortex area of the brain.
- Vincent Gracco (Yale University) is conducting a pilot project utilizing transcranial direct current stimulation (tDCS) neuromodulation as a possible treatment option for spasmodic dysphonia. This is a noninvasive technique for neuromodulation with a “nonsignificant risk” designation that is being used alone and in combination with behavioral therapy to treat a range of neurological and functional clinical disorders.
- Clark Rosen, MD (UCSF), is exploring if Daxxify, a new formula of botulinum toxin, is effective in people with laryngeal dystonia in a small investor-initiated study. Daxxify was FDA-approved for cervical dystonia (neck) in August of 2023.
- Clark Rosen, MD (University of California, San Francisco) is exploring a possible new diagnostic tool which may also help us to better understand how the vocal folds respond to stimuli in SD. This grant also includes a training component to support Joseph Kidane, a fourth-year medical student, who is pursuing a dedicated research career in laryngology.
- Abie Mendelsohn, MD (University of California, Los Angeles) is developing an advanced computer-based program to create objective measurements for outcomes of treatment. Video recordings and audio perceptual analyses of previously recorded standardized patient examinations will be compared. This grant augments a current project of the Dystonia Coalition on objective measures for diagnosis.
- Zhaoyan Zhang, PhD (UCLA) is continuing this initial work to more specifically evaluate the effectiveness of these metrics in quantifying treatment efficacy to improve voice quality in SD patients by comparing pre- and post-treatment changes in these objective metrics and correlating them to changes in perceptual ratings and patient-reported outcome measures.
- Michael Pitman, MD (Columbia University) is conducting a multi-center study to validate a measurement tool, Communication Participation Item Bank (CPIB). This scale would be used to quantify the severity of SD and response to treatment, which currently is lacking. A universal scale to show efficacy is especially important for the FDA-approval of new treatments. This grant is co-funded with Cure Dystonia Now.
- Scott Norris, MD and Evan Gordon, MD (Washington University) are examining how dysfunctional individual brain networks are modified by botulinum toxin treatment in adductor SD.
- Teresa Kimberley PhD’s team, in addition to studying rTMS as a treatment, is using functional magnetic resonance imaging (fMRI) to evaluate brain function among individuals with abductor SD.
- John Houde, MD and his team (University of California, San Francisco) are using brain imaging (magnetoencephalography (MEG)) to observe neural activity during speech in people who have SD and those who have both SD and tremor. To date, they have found some interesting and unexpected findings. Following voice onset, somatosensory areas were more active in patients than controls. When they perturbed the pitch heard by subjects as they vocalized, researchers found that the brain areas responding to this perturbation were also more active in patients than controls. These results are consistent with the hypothesis that speakers with SD are hypersensitive to their sensory feedback (both somatosensory and auditory) as they vocalize.
- Michael Hammer, MD (University of Wisconsin, Whitewater) is researching how the sensory (feeling) and brain systems contribute to the voice interruptions experienced by individuals with SD.
RESEARCH PROGRAM HIGHLIGHTS
We have funded the following research grants:
2023 | Dysphonia in the Digital Age
Yael Bensoussan, MD, and Stephanie Watts, PhD, University of South Florida, Tampa, FL
2023 | Additional Support for Wearable Non-Invasive Neuromodulation Technology
Juergen Konczak, PhD, University of Minnesota, Minneapolis, MN
2023 | Support for Daxxify Clinical Trial
Clark Rosen, MD, University of California, San Francisco, CA
2023 | Objective Measures of Laryngeal Dystonia Severity and Treatment Efficacy
Zhaoyan Zhang, PhD, University of California, Los Angeles, CA
2023 | Brainstem Activation after Injection Laryngoplasty (IL) for Unilateral Vocal Fold Paralysis (UVFP)
G. Desuter MD PhD, University Hospital Antwerp, Belgium
2023 | Support for Dystonia Coalition | Patient Center-Outcomes Project
2022 | Phase II: The Neurosurgical Treatment of Spasmodic Dysphonia: Thinking Outside the Voice Box
Christopher Honey, MD, DPhil, FRCSC, University of British Columbia, Vancouver, BC, Canada
and Stacey Halum, MD, Indiana University, Indianapolis, IN
Vincent Gracco, PhD, Yale University, New Haven, CT
2021 | Assessing Laryngopharyngeal Sensation in Patients with Adductor Spasmodic Dysphonia Using a Novel Tactile Buckle Aesthesimeter
Clark Rosen, MD, University of California, San Francisco, CA
2021 | Individual-Specific Brain Functional Connectivity Mapping of Therapeutic Response in Spasmodic Dysphonia, a form of Laryngeal Dystonia
Scott Norris, MD and Evan Gordon, MD, Washington University, St. Louis, MO
2021 | Development of a Computerized, Video-Based Measure of Severity for Laryngeal Dystonia
Abie Avraham Mendesohn, MD, University of California, Los Angeles, CA
2021 | Novel Application of rTMS in Abductor Laryngeal Dystonia
Teresa J. Kimberley, PhD, PT, The MGH Institute of Health Professions, Boston, MA
2020 | Wearable Non-Invasive Neuromodulation Technology for the Symptomatic Treatment of Spasmodic Dysphonia
Juergen Konczak, PhD, University of Minnesota, Minneapolis, MN
2018 | Validation of the Communicative Participation Item Bank as an Outcome Measure for Spasmodic Dysphonia
Michael Pitman, MD, Columbia University, New York, NY
2017 | Neural Activity in Spasmodic Dysphonia and Vocal Tremor
John Houde, PhD, University of California, San Francisco, CA
2017 | The Neurosurgical Treatment of Spasmodic Dysphonia: Thinking Outside the Voice Box
Christopher Honey, MD, DPhil, FRCSC, University of British Columbia, Vancouver, BC, Canada
2016 | Laryngeal Somatosensory Evoked Cortical Potentials in Spasmodic Dysphonia – An Initial Study
Michael Hammer, PhD, CCC-SLP, University of Wisconsin, Madison, WI (Co-funded with Dystonia Coalition)
2015 | Pathophysiology of Spasmodic Dysphonia: A Combined TMS and fMRI Study
Teresa Jacobson Kimberley, PhD, University of Minnesota, Minneapolis, MN
2012 | Identification of a Spasmodic Dysphonia Gene using Exome Sequencing
Tatiana Fuchs, PhD, Principal Investigator, and Laurie Ozelius, PhD, Significant Contributor, Mount Sinai School of Medicine, New York, NY, (Co-funded with Dystonia Medical Research Foundation)
2010 | Spatiotemporal Disturbance of Fine Movements in Adductor Spasmodic Dysphonia
Rita R. Patel, PhD, Indiana University, Indianapolis, IN
2009 | Parametric Analyses of Pathology and Treatment Effect in Spasmodic Dysphonia
Christian Kell, MD, Goethe University, Frankfurt, Germany
A two-day Research Planning Workshop co-sponsored by the NSDA, the Office of Rare Diseases, NIDCD, the National Institute of Neurological Disorders and Stroke, and the Movement Disorders Society was held in Bethesda, MD, June 2005. This workshop included experts in spasmodic dysphonia and related disorders from the United States and Europe, with expertise in neuroscience, genetics, dystonia, animal models, neuroepidemiology, neurology, otolaryngology, and speech pathology. The experts reviewed available information and made recommendations for future research. Topics included: differential diagnosis between SD and related vocal disorders; establishing procedures for identifying persons with SD with different levels of certainty; identifying risk factors that may contribute to SD onset; developing animal models to explore hypotheses related to the generation of the disorder; improving understanding of the origins of SD; and developing new treatment options. Future research was recommended to compare and to contrast SD with other forms of focal dystonia. Small exploratory treatment trials to examine new treatment options were suggested.
In 2007, the NSDA established a Scientific Advisory Board (SAB) and appointed Dr. Christy Ludlow as Chair. The SAB is charged with reviewing grant applications, providing future directions for research, and fostering collaboration with researchers, The first meeting, held in February 2008, included Christy Ludlow , PhD (Speech Pathology), Gerald Berke, MD (Otolaryngology), Craig Evinger, PhD (Neuroscience), Laurie Ozelius PhD (Genetics), and Carlie Tanner, PhD (Neuroepidemiology). Several grant applications were reviewed. A summary of research priorities was published in 2008 and provided a basis the NSDA Research Program. Dr. Gerald Berke was appointed Chair for the SAB in 2015. He continues to serve as the Chair as the organization evolved into Dysphonia International.
In 2008, the National Institutes of Health’s Office of Rare Diseases (now called Rare Diseases Clinical Research Network) solicited consortium grant applications on rare diseases. In response, dystonia researchers and patient advocacy groups formed the Dystonia Coalition, led by Dr. Hyder “Buz” Jinnah at Emory University and Dr. Joel Perlmutter at Washington University. Beginning in 2009, the Dystonia Coalition launched several projects on different focal forms of dystonia, including spasmodic dysphonia. As part of the grant, Dr. Ludlow led a study called Project 3. Its aim was to validate the method proposed by the Research Workshop by having clinicians experienced in SD use a consistent approach to distinguish between SD and other voice disorders. Up to 200 patients with either SD, tremor, or muscular tension dysphonia from four research centers were examined. All SD patients were also enrolled in Project 1, “Biorepository of the Dystonia Coalition,” which included a medical history, neurological examination and DNA samples. The final report of this study was titled, “Consensus-Based Attributes for Identifying Patients with Spasmodic Dysphonia and Other Voice Disorders” and was published in 2018. The Dystonia Coalition received its third round of funding in 2019 and is working on new projects on outcome measures for treatment and diagnosis along with providing grants for career development and pilot projects.
In March 2010, the NIDCD published two separate announcements, with a closing date of May 2013. First were traditional investigator-initiated research grants, R01s, and had an annual modular budget of $250,000. Second were R21 grant applications for exploratory and novel applications to break new ground or extend previous discoveries for two years of support, at a total cost of $275,000. Dr. Kimberley’s research into the use of transcranial magnetic stimulation in SD, sponsored by NSDA’s seed grant, resulted in a R01 grant funded by the NIDCD.