NASDAQ OMX

High Seizure Frequency in Children with Dravet Syndrome Negatively Impacts Quality of Life, New International Caregiver Survey Finds

Dela

Global survey of 584 caregivers of children, young adults and adults with Dravet illustrates the detrimental effect of debilitating, frequent seizures on quality of life and co-morbidities

Results suggest a need for more effective antiepileptic treatments

EMERYVILLE, Calif. and BREST, France, Oct. 19, 2017 (GLOBE NEWSWIRE) -- The Dravet Syndrome European Federation and Zogenix, Inc. (NASDAQ:ZGNX), a pharmaceutical company developing therapies for the treatment of rare central nervous system (CNS) disorders, announced today the publication of the initial results from a landmark survey into the clinical, social and economic consequences of Dravet syndrome on children, young adults and their families in Developmental Medicine & Child Neurology [doi:10.1111/dmcn.13591].

This study was led by Lieven Lagae, M.D., Ph.D., Professor at the University of Leuven, Belgium, Head of the Pediatric Neurology Department and Director of the Childhood Epilepsy Program at the University of Leuven Hospitals, in cooperation with the Dravet Syndrome European Federation, a federation of European Dravet syndrome patient organizations aiming to improve the quality of life of patients and caregivers. Zogenix provided financial support for the study.

Dravet syndrome is a rare form of intractable (treatment-resistant) epilepsy that begins in infancy and is associated with potentially life-threatening, frequent and severe seizures, developmental delay, cognitive impairment and an elevated risk of sudden unexplained death in epilepsy (SUDEP).1 The wide scope of comorbidities associated with this condition, combined with it being a rare disease, can be expected to result in a high impact on caregivers, affecting all aspects of their lives.2

"Children and Adults with Dravet syndrome face a diminished quality of life due to the debilitating number of seizures they experience, as well as the associated developmental issues. The prognosis for these children is poor as current treatment options are limited and often fail to provide adequate seizure control," said Isabella Bambrilla, chairman of the Dravet Syndrome European Federation. "These results from the DISCUSS survey allow us to gain a deeper understanding of seizure burden for patients with Dravet syndrome and the disease's impact on quality of life for patients and their families."

Survey findings reveal that, despite broadly following current treatment guidelines, less than 10 percent of patients with Dravet syndrome were seizure free in the previous three months. Additionally, half of the patients required at least one emergency admission and 46 percent at least one ambulance call in the previous 12 months.

With regards to associated comorbidities, nearly all (99.6 percent) patients aged 5 years or older experienced at least one or more motor, speech, learning, or behavioral impairment. Of that group, 74 percent experienced motor impairment, 80 percent experienced speech impairment, 98 percent experienced learning difficulties, 42 percent were diagnosed with autism, 24 percent were diagnosed with ADHD, and 51 percent experienced other behavioral difficulties. On average, patients aged 5 years or older had four of the six surveyed impairments or comorbidities. Of interest, 13 percent of all patients older than 5 years of age were reported as not speaking at all.

Results from the survey also suggest that physician awareness of Dravet syndrome has markedly improved over time. Doctors immediately recognized Dravet syndrome in 45 percent of preschool children versus only 12 percent of adult patients. Overall, there were no clear differences in disease characteristics for patients when looking at the length of time to diagnosis, but early diagnosis is associated with earlier access to appropriate drug therapy and earlier access to specialized rehabilitation programs.

"As a physician who has worked with children and young adults with Dravet syndrome for many years, I have witnessed first-hand the negative effect this condition has on quality of life for both patients and their loved ones," said Lieven Lagae, M.D., Ph.D., Professor at the University of Leuven, Belgium, Head of the Pediatric Neurology Department and Director of the Childhood Epilepsy Program at the University of Leuven Hospitals and lead author of the article. "Currently, there are no available therapies that are able to provide lasting control over seizures for the vast majority of patients. The Dravet syndrome community desperately needs new treatment options that provide durable seizure control."

About the Survey

The Dravet syndrome caregiver survey (DISCUSS), was the largest survey ever conducted with caregivers of children with Dravet syndrome. DISCUSS was an online international cross-sectional study that sought to determine the social and financial impact of Dravet syndrome on patient and their caregivers and explore healthcare resource utilization associated with its current management. The survey was available in 12 languages (English, Spanish, Portuguese, French, Dutch, German, Italian, Polish, Croatian, and Romanian, Latin American Spanish and Brazilian Portuguese) and completed by 584 caregivers, of which over 92 percent lived in Europe.

Participants were recruited through email invitations to approximately 1,000 members of European patient advocacy groups associated with the Dravet Syndrome European Federation (DSEF) as well as through related internet based sources (Facebook and Twitter).

About the Dravet Syndrome European Federation

Dravet Syndrome European Federation (DSEF) is a federation of 15 European Dravet syndrome patient organizations aiming to improve the quality of life of patients and caregivers, promote research and knowledge exchange around Dravet syndrome, raise funds for medical and social research and raise disease awareness. www.dravet.eu

Aggregated DISCUSS survey results are available to the Dravet community for research purposes. Patient organizations, researchers, physicians, and industry can request access to the data via the DSEF. The DSEF board and their data management committee will consider any request for access where the proposed use of the data is of benefit to the Dravet community.

About Zogenix

Zogenix (Nasdaq:ZGNX) is focused on developing therapies for patients with rare central nervous system (CNS) conditions that have limited or no treatment options but face a critical need. For more information, visit www.zogenix.com.

Dravet Syndrome European Federation Contact: 
Isabella BRAMBILLA, President - +393356399693

Zogenix Contacts:

Investors: Andrew McDonald
Founding Partner, LifeSci Advisors LLC
646-597-6987 | Andrew@lifesciadvisors.com

Media: David Polk
Senior Media Relations Strategist, INC Research/inVentivHealth
310-309-1029 | david.polk@inventivhealth.com

REFERENCES:

1. Dravet C. The core Dravet syndrome phenotype. Epilepsia 2011; 52(Suppl. 2): 3-9.

2. Jensen MP, Brunklaus A, Dorris L, et al. The humanistic and economic burden of Dravet. Epilepsy Behav 2017; 70: 104-9.




This announcement is distributed by Nasdaq Corporate Solutions on behalf of Nasdaq Corporate Solutions clients.
The issuer of this announcement warrants that they are solely responsible for the content, accuracy and originality of the information contained therein.
Source: Zogenix, Inc. via Globenewswire

Om

NASDAQ OMX
NASDAQ OMX



Följ NASDAQ OMX

Abonnera på våra pressmeddelanden.

Senaste pressmeddelandena från NASDAQ OMX

Hoylu AB: Hoylu VD ökar ägande23.5.2018 08:30Pressmeddelande

Malmö, Sverige, 23 maj 2018 - Hoylu VD, Stein Revelsby har köpt 200 000 aktier (cirka 1,3%) i Hoylu till ett genomsnittspris på 4,31 per aktie. Hans totala innehav per 23 maj är 518 975 aktier och 625 900 optioner. För mer information, kontakta: Stein Revelsby, VD Hoylu +1 213 440 2499 Email: sr@hoylu.com Karl Wiersholm, CFO Hoylu +1 425 829 2316 Email: kw@hoylu.com Om Hoylu Hoylu är ett innovativt företag som levererar lösningar för digitala arbetsytor. Hoylu Suite är det oumbärliga verktyget som möjliggör för företag att leverera högkvalitativt samarbete på den moderna arbetsplatsen med funktionen att använda vilken enhet som helst, för att arbeta smartare och roligare inom olika branscher som såsom teknik, läkemedel, konstruktion, entreprenad, tillverkning, resor, gästfrihet, grafisk design och många fler. Kortnamn: Hoylu Marknadsplats: Nasdaq First North Stockholm Certified Adviser: Mangold Fondkommission AB +46 (0) 8 50 301 550 Publicering Denna information lämnades, genom ovanstå

Hoylu AB: Hoylu CEO increases ownership23.5.2018 08:30Pressmeddelande

Malmo, Sweden, May 23, 2018 - Hoylu CEO, Stein Revelsby has purchased 200,000 shares (approximately 1.3%) in Hoylu at an average price of SEK 4.31 per share. His total holding per May 23 is 518,975 shares and 625,900 options. For more information, please contact: Stein Revelsby, CEO Hoylu + 1 213 440 2499 Email: sr@hoylu.com Karl Wiersholm, CFO Hoylu + 1 425 829 2316 Email: kw@hoylu.com About Hoylu Hoylu delivers innovative solutions to allow global collaborative teams plan, create and share information that will enrichen the user experience in the virtual office. The Hoylu Suite delivers a comprehensive set of personalized digital workspaces to enable teams across locations, on any device, to work smarter and with more fun across major industries including Engineering, Education, Pharmaceutical, Construction, Manufacturing, Graphic Design and many more. For more information visit: Www.hoylu.com or Www.introduce.se/foretag/hoylu Ticker: Hoylu Marketplace: Nasdaq First North Stockholm C

DealCloud announces global expansion, opening of EMEA Headquarters23.5.2018 08:00Pressmeddelande

LONDON, May 23, 2018 (GLOBE NEWSWIRE) -- DealCloud, a technology leader for deal & relationship management in the private capital markets, announces the opening of its EMEA headquarters in Holborn, London, United Kingdom. With the opening of the regional headquarters in London, DealCloud operates out of 4 offices globally. Supporting a rapidly growing client base in the region, DealCloud now provides implementation services, client support, and account management through a dedicated team based out of the London office. "We work closely with every client to tailor our exceptional technology and capabilities to their specific process," says DealCloud Co-Founder and Chief Revenue Officer Ben Harrison. "We are committed to delivering the best possible results for our clients, and we believe growing our team in London is the best way to do this." "Supporting dozens of clients in EMEA today, and adding new clients every week, we are excited about the impact our office expansion will have wit

BIMobject AB: BIMobject acquires Dubai Media City-based social media platform The BIM Hub23.5.2018 08:00Pressmeddelande

BIMobject AB, listed at Nasdaq First North, has today acquired all companies that are part of The BIM Hub Group. The group is based in Dubai, United Arab Emirates, and in England. BIMobject takes over some employees, customer agreements, technical platforms, domains, trademarks and all customer data as well as relationships on thebimhub.com . The BIM Hub is a privately-owned web platform with operations in Dubai, United Arab Emirates, and West Yorkshire, England. The BIM Hub is a professional social media platform for BIM users, property owners, architects, engineers and contractors as well as project managers, property managers and facility managers. The platform's focus is to offer content such as educational materials, presentations, standards, white papers, videos, news, and events. In addition, there are various forums adapted for the construction industry, working with or in connection with the emerging BIM industry. The BIM Hub is advertising-funded, but BIMobject's intention is

BIMobject AB: BIMobject förvärvar sociala medier-plattformen The BIM Hub med huvudkontor i Dubai Media City23.5.2018 08:00Pressmeddelande

BIMobject AB (publ), noterat vid Nasdaq First North, har idag förvärvat samtliga bolag som ingår i The BIM Hub group med bas i Dubai, Förenade Arabemiraten och i England. Bolaget övertar viss personal, kundavtal, teknisk plattform, domäner, varumärken och all kunddata samt relationer på sociala medier-plattformen thebimhub.com . The BIM Hub är en privatägd webbplattform med verksamhet i Dubai, Förenade Arabemiraten, och West Yorkshire i England. The BIM Hub är en professionell sociala medier-plattform som samlar BIM-användare, fastighetsägare, arkitekter, ingenjörer och byggentreprenörer samt projektledare och fastighets- och anläggningsförvaltare. Plattformens fokus är att erbjuda innehåll som exempelvis utbildningsmaterial, presentationer, standards, white papers, videos samt nyheter och event. Därtill finns olika forum anpassat för byggindustrin som arbetar med eller i anslutning till den framväxande BIM-industrin. The BIM Hub är reklamfinansierad men BIMobjects avsikt är att snaras

Northland Power Announces Retirement of CEO John Brace and Appointment of Mike Crawley as Chief Executive Officer, Effective August 4, 201823.5.2018 01:27Pressmeddelande

TORONTO, May 22, 2018 (GLOBE NEWSWIRE) -- Northland Power Inc. ("Northland") (TSX:NPI) today announced that Chief Executive Officer John Brace will retire on August 4, 2018 after 30 years with the company. Mike Crawley, currently Northland's Executive Vice President, Development has been appointed to the role of Chief Executive Officer, effective August 4, 2018. Mr. Brace and Mr. Crawley will work together to ensure a smooth transition. Mr. Brace will continue to serve as a Director of Northland. John joined Northland in 1988, shortly after the company was founded. He was appointed Chief Executive Officer in 2005. He has steered Northland through many of its projects, initiatives and growth. Under his leadership, the company has grown to its current enterprise value of $12 billion. John was appointed to Northland's Board of Directors on April 4, 2018, and along with Northland's other board members, will stand for re-election at Northland's Annual General Meeting on May 23rd, 2018. Mike

I vårt pressrum kan du läsa de senaste pressmeddelandena, få tillgång till pressmaterial och hitta kontaktinformation.

Besök vårt pressrum