Other News New Advocacy Website Launched
Scientific Updates
FDA Approves Xeomin for the Treatment of Cervical Dystonia and Blepharospasm
Research Opportunity in Spasmodic Dysphonia
NSDA Funds New Research Grant on Spasmodic Dysphonia
Dystonia Awareness Week: June 6-12
Message from NSDA's New President - Charlie Reavis
The Congressionally Directed Medical Research Program Adds Dystonia to the List
NIH Funds $6.2 Million Dollar Grant for Focal Dystonias
Spasmodic Dysphonia and Quality of Life Research Study Results
Botulinum Toxin Update
NSDA Funds Research Grant
Brainstem Pathology in Spasmodic Dysphonia
Research Priorities in Spasmodic Dysphonia
Participate in the 2010 Dystonia Advocacy Day
Share Your Story Winner Announced
The Experience and Impact of Reading the "Share Your Story" Entries
Spasmodic Dysphonia Featured on ABC's Medical Mysteries Program
Changes in the Brain Identified in SD
SD Research Program Launched and Scientific Advisory Board Appointed
CEU Course Available on Spasmodic Dysphonia
Easier Done than Said...Living with a Broken Voice: New Book on Spasmodic Dysphonia
Emily Lim finds her Voice through Writing
Safety Issues Regarding Botulinum Toxin
ASHA provides Insurance Checklist for Speech Therapy Benefits
Comments
|
|
NIH Funds $6.2 Million Dollar Grant for Focal Dystonias
Officials at the National Institutes of Health (NIH) have announced the funding of a five year clinical research grant award aimed at forming a multicenter Dystonia Coalition to advance clinical research on primary focal dystonias, including cervical dystonia, spasmodic dysphonia, blepharospasm, and others. Leading the Coalition will be H. A. Jinnah, M.D., Ph.D., Professor of Neurology and Human Genetics at Emory University in Atlanta, GA.
The $6.2 million award will allow the Dystonia Coalition to cultivate a better understanding of the primary focal dystonias and find better therapies. This includes projects to develop a better understanding of their natural history, establish instruments appropriate for monitoring disease severity in clinical trials, and develop proper diagnostic criteria. The creation of a biorepository to store biological samples to support future research is also planned, making these resources available to investigators worldwide. The Coalition will bring together the most committed dystonia researchers in North America and Europe, along with dystonia patient advocacy groups.
“Dystonias are rare and devastating diseases, with limited and sometimes inadequate treatment options,” explains Dr. Jinnah. “Funding of the Dystonia Coalition will allow us to address unmet needs in focal dystonia research, as well as make resources available to other investigators that will help to advance the field.”
One component of this grant is aimed at developing an accurate diagnostic test for identifying patients with spasmodic dysphonia who do not have other voice disorders. This was identified as the highest priority need when a research planning conference was held at the NIH in June 2005. The report of that meeting provided the impetus for this project and contained a pilot study of a proposed diagnostic test.
The study will take place over five years and has three parts. In the first, the diagnostic test will be evaluated at four voice centers (Washington University at St Louis; Medical College of Wisconsin in Milwaukee; New York Center for Voice and Swallowing Disorders associated with Columbia University, and Emory University in Atlanta) to determine whether otolaryngologists, speech pathologists and neurologists at each center can use it accurately and reliably for determining which patients have spasmodic dysphonia and which patients have other voice disorders such as psychogenic dysphonia, muscular tension dysphonia or vocal fold paresis.
In the second phase it will be determined if medical professionals not specializing in voice can also use it to accurately and reliably diagnose spasmodic dysphonia. In the final phase, a double blind treatment study will determine if this new test can accurately quantify changes in severity of the disorder for conducting clinical trials in spasmodic dysphonia. If successful this study will provide a new instrument to serve as a basis for increasing research on spasmodic dysphonia, as we will then be able to identify persons with spasmodic dysphonia and determine the severity of their voice disorder.
“This funding will allow us to develop the first test for accurately identifying who has spasmodic dysphonia and will allow us to measure treatment effects. This will provide the base from which to increase research attention to further understanding and improved treatment for spasmodic dysphonia,” says Christy Ludlow, Ph.D., Scientific Director of the National Spasmodic Dysphonia Association. The NSDA is proud to be part of the research coalition and hopes it will bring a greater interest to this field of research.
The NSDA is dedicated to advancing medical research into the causes of and treatments for spasmodic dysphonia, promoting physician and public awareness of the disorder, and providing support to those affected by spasmodic dysphonia through symposiums, support groups, and on-line resources. The NSDA is comprised of people with SD, healthcare professionals, volunteers, friends, and families. It is the only organization dedicated solely to the SD community. Together, we continue to pursue our mission through awareness, advocacy, and outreach; help to improve the lives of people dealing with SD; and to work to support and encourage research in order to bring a greater understanding to this disorder.
Patient Advocacy Groups that are members of the Dystonia Coalition include:
• American Dystonia Society
• Bachmann-Strauss Dystonia & Parkinson Foundation
• Beat Dystonia
• Benign Essential Blepharospasm Research Foundation
• DySTonia, Inc.
• Dystonia Medical Research Foundation
• National Spasmodic Dysphonia Association
• National Spasmodic Torticollis Association
• Tyler's Hope for a Dystonia Cure
• We Move
|
