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You Can Participate in Research!
October 27, 2021 - November 16, 2021
WE NEED YOUR HELP! Earlier this year several BEBRF patients participated in focus groups for a Patient-Centered Outcome (PCO) research project developing a phone app that will track the efficacy of botulinum toxin injections from injection cycle to injection cycle. The project has been created by Drs. Sarah Pirio Richardson (University of New Mexico) and Brian Berman (Virginia Commonwealth University), both on the BEBRF Medical Advisory Board. This project is funded by the Dystonia Coalition. They are ready to move on to the next phase of the project, and you can help.
They are currently collecting data from patients with blepharospasm and now want to hear from YOU!
The Goal: To gather data that will be essential for developing future novel treatments for dystonia.
How they are doing it: By learning more about the symptoms and activities that can be troublesome for people with blepharospasm, 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 they develop tools to gather this information, feedback from patients like you is essential.