INDIANAPOLIS, MINNEAPOLIS and CARLSBAD, Calif. -- Experts in academia, patient advocacy and the health care industry have begun a partnership to improve communication about epilepsy among pediatricians, pediatric neurologists and the families of pediatric patients.
Epilepsy is a brain disorder that causes seizures. The Centers for Disease Control and Prevention reports that almost 3.5 million Americans had active epilepsy in 2015, including 470,000 children. In a 2017 guideline, the American Academy of Neurology urged health care providers to report risks associated with the condition to caregivers of children living with epilepsy. Those risks include sudden unexpected death in epilepsy, or SUDEP, the leading epilepsy-related cause of death.
Digital Health Solutions LLC, the Child Neurology Foundation and Greenwich Biosciences Inc. are working together to design and implement a high-tech tool to automatically generate SUDEP risk screening during routine primary care visits. This will provide prompts for providers to discuss the risk of SUDEP with caregivers.
Internal conversations led Greenwich Biosciences personnel to consider collaborating with other organizations to improve dialogue around difficult but important topics in pediatric epilepsy, such as the risk of SUDEP, said CEO Justin Gover.
"Greenwich Biosciences is motivated by our mission to help address the unmet needs of the epilepsy patient community. This includes better strategies to enable conversations between health care providers and caregivers about the risk of SUDEP," Gover said. "Our goal is to strengthen the connection between providers, patients and caregivers by facilitating informed discussions to help ensure that SUDEP risk screening and advice are part of at-risk patients' routine primary care visit."
The Medical Affairs group at Greenwich Biosciences contacted Amy Brin Miller, executive director of the Child Neurology Foundation, to collaborate. Miller said the foundation conducted parallel surveys of families and health care providers in 2016 and 2017 that revealed a substantial disconnect.
"A majority of families wanted to discuss their child's risk of SUDEP with their pediatric neurologists, but instead were more likely to go to a peer or the internet. Historically, it has been noted that providers were less willing to discuss topics due to their worry of causing increased anxiety for the caregiver," Miller said. "Clearly, these were missed opportunities. CNF sees this innovative collaboration as a strategy aimed at improving this practice in our community while empowering the essential family-professional partnership."
The Child Neurology Foundation and Greenwich Biosciences held exploratory conversations with Dr. Stephen Downs, the Jean and Jerry Bepko Professor of Pediatrics at the Indiana University School of Medicine and president of Digital Health Solutions, about joining the partnership. Digital Health Solutions commercializes software called Child Health Improvement through Computer Automation, or CHICA, to help physicians identify pediatric patients' problems earlier. The company licenses the software through the IU Innovation and Commercialization Office.
"Through a questionnaire administered on an electronic tablet, CHICA captures patient-reported data and provides clinical advice to the physician through the electronic health record," Downs said. "The goal of the collaboration between Digital Health Solutions, CNF and Greenwich Biosciences is to build into CHICA the ability to identify children at risk for SUDEP and alert the pediatrician that counseling is needed. We will test the system in five clinics in the Indianapolis-based Eskenazi Health System to measure its efficacy."
The research collaboration contract between Greenwich Biosciences, CNF and Digital Health Solutions was signed in December. While the SUDEP module is being created, CNF will integrate child neurology expertise in the development of the SUDEP module as well as provide patient education materials on SUDEP and opportunities for caregiver peer support.
About Indiana University Innovation and Commercialization Office
Indiana University ICO is tasked with the protection and commercialization of technology emanating from innovations by IU researchers. Since 1997, IU research has generated almost 3,000 inventions resulting in more than 4,500 global patent applications. These discoveries have generated more than $142 million in licensing and royalty income, including more than $115 million in funding for IU departments, labs and inventors.
About Greenwich Biosciences
Greenwich Biosciences is committed to improving the lives of patients by developing and commercializing cannabinoid pharmaceuticals for rare and catastrophic diseases with limited or no FDA-approved treatments. Greenwich, along with its parent company GW Pharmaceuticals plc, is currently advancing an orphan drug development program in certain childhood-onset epilepsy syndromes with its investigational drug, Epidiolex® (cannabidiol), for which a New Drug Application is currently under priority review by the U.S. Food and Drug Administration. For more information, see the company's website or connect via Twitter and LinkedIn.
About Child Neurology Foundation
Child Neurology Foundation is a 501(c)(3) advocacy organization committed to serving as a collaborative center of education and support for children and families living with neurologic conditions. For more information, visit the foundation's website or connect via Facebook, Twitter or Instagram.
About Digital Health Solutions
Digital Health solutions provides workflow automation tools for pediatric providers that improve efficiency and save health systems money. The software integrates with existing electronic health records and eases the pain of meeting quality metrics while simultaneously improving care. It collects data directly from patients and families, prioritizes what is most important to the provider, and streamlines clinical documentation. For more information, visit the company's website or connect via Twitter and LinkedIn.