Formulating New Ways to Help ALS Patients
More than two dozen experts came to the MGH Institute campus recently to develop a new clinical tool for assessing speech and swallowing difficulties due to amyotrophic lateral sclerosis (ALS).
Hosted by Professor Jordan Green, PhD, the Northeast ALS Consortium (NEALS) Bulbar Symposium brought together more than two dozen neurologists and speech-language pathologists from the U.S. and other countries.
The working group discussed creating standards to establish diagnostic protocols, which researchers and clinicians can use to monitor speech and swallowing deficits, a condition known as bulbar disease progression, in people with ALS.
The group has developed a draft of protocols it plans to distribute to a wider group of clinicians in the coming months.
“Our goal is to standardize data collection across sites and reduce patient and clinician burden, since ALS patients already undergo clinical testing from multiple health-related disciplines, all of whom consider the disease from their perspective,” says Dr. Green, whose focus is ALS research in the IHP’s Speech and Feeding Disorders Lab. “Developing a reliable and valid bulbar motor assessment that is also brief, inexpensive, and easy to use in clinical settings will go a long way toward improving early diagnosis and ultimately extending the quality of life for our patients.”