Benjamin Brooks, MD
Benjamin Brooks, MD, director of the Carolinas Neuromuscular/ALS-MDA Center at Carolinas HealthCare System's Neurosciences Institute, was the senior author and one of the lead investigators tapped to create a prospective registry. The PBA Registry Series (PRISM) involved over 5,000 patients with different neurological diseases who had developed a pseudobulbar affect (PBA).
A neurological condition, PBA is characterized by involuntary, sudden and frequent episodes of laughing and, or crying, which can be socially disabling and embarrassing. Although this condition occurs secondary to many neurological conditions, it affects more than two million people in the United States and is often underdiagnosed, undertreated and sometimes inappropriately treated. "My hope is that the foundation laid with the PRISM registry will now evolve to looking at this condition in more common diseases such as dementia, traumatic brain injury or stroke," Dr. Brooks said.
Many medical professionals often misinterpret the symptoms of PBA and misdiagnosis patients as having depression. As a result, an antidepressant is prescribed, which in most cases will not be effective. The patient will continue to suffer from emotional exhaustion and social isolation. Without realizing that they have this condition, people with PBA often adapt their lives to avoid things that trigger the response, including their interaction with others. These misdiagnoses can also negatively affect their caregivers and loved ones.
PRISM was established to provide additional PBA symptom prevalence data in a large representative sample of patients with neurological conditions known to be associated with PBA. The publication of PRISM (PDF) will educate both the medical field and the community at large to recognize the signs and treatment so that the millions of people who suffer will now get relief, which, for many, will come from the drug dextromethorphan (DMq).
DMq was approved in 2010 by the U.S. Food and Drug Administration. Dr. Brooks, who helped develop the drug, determined that many amyotrophic lateral sclerosis (ALS) patients who suffered from PBA got relief when taking DMq.
While working on the PRISM registry, Dr. Brooks established that PBA is more widespread among other neurological conditions and can affect patients with "lower frequency" diseases that are more common, such as traumatic brain injury, dementia, stroke, Parkinson's disease and multiple sclerosis.
Further research, currently ongoing worldwide, and led locally by Urvi Desai, MD, from Carolinas Medical Center-Neurology & Sleep Center, includes the PRISM 2 registry. This brings together Carolinas Medical Center, Carolinas Rehabilitation, CMC-NorthEast and CMC-Randolph to evaluate the extent to which screening tools confirm actual PBA presence, as well as the extent to which reduction of identified PBA episodes may improve patient outcomes in dementia, stroke and traumatic brain injury.
Dr. Desai is currently in the pre-screening stage of patients. Her goal is to find a minimum of 15 who can participate. She is asking physicians around the System to help her recruit these patients based on the following criteria:
During the duration of the study, participants will be asked to visit the investigator site three times for study-related examinations and safety and effectiveness measures. The next step is to analyze the patients after giving them the drug. Dr. Desai will monitor the patients who are selected for the study.
"We are excited to be part of the study and hope that this drug is able to help more patients who suffer from PBA in the future," Dr. Desai said.
For more information about this trial or if you have patients who may be appropriate participants, please contact Tiffany LeBanc at firstname.lastname@example.org or 704-446-1982, or Rita Rouse at rita.rouse@email@example.com or 704-446-1902.