INDIANAPOLIS
and MINNEAPOLIS and CARLSBAD,
Calif., Feb. 13, 2018
/PRNewswire/ -- Experts in academia, patient advocacy and the
health care industry have begun a partnership to improve
communication about epilepsy between 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,
visit www.greenwichbiosciences.com or connect with the company
on Twitter and LinkedIn.
About Child Neurology Foundation
Child Neurology Foundation is a 501c3 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
www.childneurologyfoundation.org 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 www.digitalhealthsolutionsllc.com or connect via
Twitter and LinkedIn.
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SOURCE Child Neurology Foundation (CNF)