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 sjpentecost@salud.unm.edu
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.