This month we highlight new research on inaccurate labeling of CBD products, the first FDA-approved drug treat seizures for CDLK5, and more.


** Epilepsy Research News: April 2022
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This month in Epilepsy Research News, we highlight an interesting study of 39 products containing cannabidiol (CBD), such as beverages and oils, which found that the majority were inaccurately labeled. ([link removed]) Next, we share the announcement of the first FDA-approved drug, Ztalmy®, to treat seizures for CDLK5 ([link removed]) deficiency disorder (CDD), a rare epilepsy caused by mutations in the CDKL5 gene, in children two years of age and older.

In pediatrics news, we share a study that found that pediatric patients with drug-resistant epilepsy that received vagus nerve stimulation and antiseizure medications (ASMs), had lower hospital costs compared to those using ASM ([link removed]) alone. Additionally, another study found that assessing the number of days that children are minimally impacted by seizures may be a more appropriate method of evaluating severe childhood epilepsies than measuring seizure frequency alone when determining a patient’s quality of life ([link removed]) .

Switching gears, we report on the development of a system that uses specialized sound waves to release medication ([link removed]) into specific areas of the brain to stop seizure activity. Finally, a group of researchers reports the development of an animal model of post-traumatic epilepsy (PTE) ([link removed]) that has spontaneous seizures after traumatic brain injury as well as behavioral disturbances which can occur in people with PTE.

Summaries of the above mentioned information follow below.

Inaccuracy of Non-Prescription Cannabidiol (CBD) Product Labeling: An analysis of 39 products containing CBD (a non-intoxicating substance found in the cannabis sativa plant) finds that most of these products were inaccurately labeled, and in fact, may contain measurable amounts of THC (an intoxicating substance found in cannabis sativa). The study analyzed the contents of CBD-infused beverages, oils, and other products, including chocolate bars, honey, coconut oil, transdermal patches, and more. Of these products, only 15.4 percent were accurately labeled. Unreliable labeling raises concerns about potential exposure to unwanted substances like THC and inconsistent exposure to CBD if used for medicinal purposes. Learn more ([link removed])

FDA Approves Ztalmy® (Ganaxolone) for CDLK5 Deficiency Disorder (CDD): The FDA has approved a new therapy to treat seizures for CDD, a rare epilepsy caused by mutations in the CDKL5 gene. The drug, Ztalmy (ganaxolone), manufactured by Marinus Pharmaceuticals, is now approved to treat seizures associated with CDD in patients 2 years of age and older. This medication is the first FDA-approved treatment specifically for CDD. It is expected to be available for patients in July 2022. Learn more ([link removed])

Vagus Nerve Stimulation (VNS) Lowers Costs of Care for Children with Uncontrolled Epilepsy: A new study examined a population of pediatric patients with drug-resistant epilepsy and found that the patients who received VNS, when used with antiseizure medications (ASM), had lower hospital costs compared to the use of ASMs alone. Vagus nerve stimulators are implantable devices that send mild electrical pulses to the brain by stimulating the vagus nerve. The researchers note that these results are important because they show lower costs to the health care system following VNS surgery. Learn more ([link removed])

Measuring Quality of Life in Children with Epilepsy: Researchers have found that assessing the days children are minimally impacted by seizures may be a more appropriate method of evaluating severe childhood epilepsies than measuring seizure frequency alone when determining quality of life. The researchers worked with patient advocacy organizations and developed a questionnaire that was distributed to primary caregivers of children with developmental and epileptic encephalopathies (DEEs), a group of severe epilepsies that often have a genetic basis. The researchers found that quality of life scores were strongly associated with the number of days minimally disrupted by seizures rather than seizure frequency alone, an often-used measure of quality of life. These results suggest the need to re-evaluate how disease severity is measured in DEEs. Learn more ([link removed])

Development of Drug Delivery System to Control Seizures: Researchers have developed a system that uses specialized sound waves to release medication into specific areas of the brain to stop seizure activity. So far, the researchers have tested the system in a laboratory setting but envision creating a device that could be triggered by a person when they have an aura before the onset of a seizure, or automatically by a system that detects seizure activity beginning in the brain, activating the release of the drug to stop the seizure from developing. Though the researchers note that further studies are necessary to determine the utility and safety of the technology in humans, they state that this novel new way of delivering drugs could be an effective solution, and a life-changer for some patients with epilepsy. Learn more ([link removed])

Development of an Animal Model of Post-Traumatic Epilepsy (PTE): A team of researchers have created a novel animal model that has spontaneous recurrent seizures after brain injury, similar to the spontaneous recurrent seizures that occur in humans who develop epilepsy following a traumatic brain injury, a type of epilepsy called PTE. In addition to changes in brain activity, the team also found changes in the animals’ behavior and degeneration of neurons in the brain. The team states that this model provides a vital tool to further understand PTE and can be used to test medical treatments to prevent seizures and other neuropsychiatric conditions in military personnel. Learn more ([link removed])
Our mission is to find a cure for epilepsy, by promoting and funding patient-focused research. CURE Epilepsy is a non-profit 501(c)(3) tax-exempt organization. Our tax identification number is 36-4253176.
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