“In a recently conducted survey by the Dravet Syndrome Foundation, 74 percent of caregivers expressed concerns about the emotional impact on siblings of children with Dravet syndrome, and the interim results from the Sibling Voices Survey are a significant advancement in our understanding of the far-reaching implications that severe childhood epilepsies have on the lives of siblings and loved ones,” said Nicole Villas, President & Scientific Director of the Dravet Syndrome Foundation Board of Directors. “We are optimistic that the insights gained from the Sibling Voices Survey will assist in the development of tools to help families, and we are grateful for Zogenix’s dedication to addressing the unmet needs of this patient community.”
To date, there have been 183 total respondents to the Sibling Voices survey; this interim analysis focuses on the 27 youngest respondents (< 18 years old). Of siblings aged 9-12 years old, two-thirds reported feeling worried or scared when their sibling has a seizure and the majority (83 percent) feel easily scared and fearful their sibling will die. Siblings in the 13-17 years old range reported concerns over their parents being stressed and/or unhappy (60 percent) and over half (53 percent) reported feeling irritable and/or easily frustrated. Many of these same group of children (73 percent) stated they had been talked to about the possibility of their sibling with severe epilepsy dying and indicated feeling stressed and worried by this possibility (43 percent).
“The broader impact of severe childhood epilepsies on the entire family, and in particular to siblings, is an area of major concern expressed by many caregivers,” said Bradley Galer, M.D., Zogenix’s Executive Vice President and Chief Medical Officer. “To our knowledge, this study represents the first-of-its-kind research to quantify how having a child with severe epilepsy in the household affects other siblings. This is an essential step towards the creation of important resources for families in this difficult situation.”
Source: Zogenix, Inc., a pharmaceutical company developing therapies for the treatment of rare central nervous system (CNS) disorders, today announced interim results of the Sibling Voices Survey, which was developed by Zogenix to evaluate the psychosocial impact on the siblings of patients with severe childhood epilepsies, including Dravet syndrome and Lennox-Gastaut syndrome (LGS). The survey was conducted in collaboration with Lauren Schwartz, Ph.D., of the University of Washington, Department of Rehabilitation Medicine, and the results were presented at the National Organization for Rare Disorders (NORD) and Orphan Products Breakthrough Summit, taking place October 16-17, 2017, in Washington, D.C.
Zogenix is currently conducting a Phase 3 clinical program in the U.S. and internationally of its investigational therapy, ZX008, for the treatment of Dravet syndrome. The Company recently reported positive top-line results from its first Phase 3 trial (Study 1) in this Phase 3 program. ZX008 for the treatment of Dravet syndrome has orphan designation in both the U.S. and Europe, and the development program has received Fast Track designation in the U.S. Zogenix intends to initiate a Phase 3 clinical trial for ZX008 in LGS before the end of 2017. ZX008 was recently designated as an orphan drug for the treatment of LGS.