The National Spasmodic Dysphonia Association (NSDA) is excited to announce a new grant co-funded with Cure Dystonia Now (CDN) entitled, “The Validation of the Communicative Participation Item Bank as the Outcome Measurement Protocol for Spasmodic Dysphonia.”
This multi-center grant led by Dr. Michael Pitman is aimed to validate the use of the Communication Participation Item Bank (CPIB) as a tool to (1) measure the severity of restrictions in communication participation in SD patients and (2) accurately measure the outcome of a treatment for SD relative to the disease’s impact on communicative participation before and after treatment.
Developed by the efforts of Dr. Carolyn Baylor, the CPIB is considered an accurate outcome measure in compliance with NIH PROMIS guidelines that harness recent advances in information technology, psychometrics, and qualitative, cognitive, and health survey research. It has already been shown to be accurate for measuring the effect of multiple sclerosis, amyotrophic lateral sclerosis (ALS), Parkinson’s disease and head and neck cancer on communication. The CPIB is likely to be more relevant for evaluation of SD because SD is itself a communication disorder, not a disease that coincidentally affects communication.
The study will test whether the CPIB is a valid tool to measure communication impairment in patients with spasmodic dysphonia and whether it can detect significant changes in communication during the treatment process. If successful, it could impact current treatment options and the evaluation of novel therapies.
Lacking a universal validation tool for use within the SD population is an obstacle to data analysis. This study aims to show that CPIB can be used clinically to accurately determine the severity of a patient’s symptoms. It can also be used to evaluate the impact of existing treatments on communication participation as well as the benefits of small dosing changes to allow optimization of dosing. “We are thrilled about this project because we believe this will have a positive impact on research and treatment for those with SD,” said CDN Co-President Marc Miller.
“Once there is data-driven evidence that a treatment works, it’s easier for it to be approved and covered for that condition, said NSDA President Charlie Reavis. “That’s why we are so excited to work collaboratively with CDN on this important project.”
The participating centers include:
Dr. Michael Pitman, Columbia University, New York, NY
Dr. Gaelyn Garrett, Vanderbilt Voice Center, Nashville, TN
Dr. Adam Klein, Emory Voice Center, Atlanta, GA
Dr. Lucy Hicklin, St. George’s Hospital, London, UK
Dr. Carolyn Baylor, University of Washington, Seattle, WA