London On. –May 1st 2024- Pulse Infoframe, an industry leader in global patient registries and real-world evidence generation has announced today that their abstract for a poster presentation has been accepted for ISPOR 2024 taking place May 5th-8th 2024 in Atlanta Georgia and virtually. ISPOR 2024 is the leading global conference for health economics and outcomes research where experts come together to discuss the latest trends in the industry. The poster presentation will focus on data from the Global CDKL5 Registry developed by Pulse alongside our partners from the Orphan Disease Center at UPenn and The Loulou Foundation. and is titled:
Diagnostic Journey, Seizure Burden, and Quality of Life Among Patients with CDKL5 Deficiency Disorder Using Real-World Data
Session Information
Poster Session: Poster Session 2
Poster Code: PCR70
Date: Monday, May 6
Poster session time: 3:30PM-6:30PM
Discussion Period: 4:00PM-5:00PM
“Evidence generation and real world have evolved into a key tenant on the foundation required for accelerating drug development. Pulse has been fortunate to help shape the CDKL5 patient registry, through our experience in neurodevelopmental conditions which we share across all affected communities. It is an honour to collaborate with this highly motivated global community.” – Femida Gwadry-Sridhar, Founder & CEO of Pulse Infoframe
The poster will be available to view on the ISPOR app for those who have registered for the conference and will be shared on our website following the conclusion of the event. For more information about the our CDKL5 patient registry visit https://www.cdkl5registry.org/
About CDKL5
CDKL5 stands for cyclin-dependent kinase-like 5, which is a protein whose gene is on the X chromosome. Mutations in it cause deficiencies in the protein level and severely affect brain development. About 90% of patients with CDKL5 deficiency disorder (CDD) are girls. CDD patients suffer from seizures that usually begin within the first few months of life, as well as from profound neurodevelopmental delay. Estimates suggest that one in 40,000-60,000 live births develop the disorder, making it difficult to study when compared to common diseases like cancer and heart disease.
About Pulse Infoframe
Pulse Infoframe is a pioneer and leading provider in the life science industry with a real-world evidence (“RWE”) generation platform enabling acceleration of scientific research and the development of new therapeutic products. Pulse’s enterprise-grade platform adaptive technology is trusted by a global, ‘blue-chip’ customer base of top pharma companies, patient advocacy groups and academic medical centers. Learn more at www.pulseinfoframe.com.
About the Loulou Foundation
The Loulou Foundation is a private non-profit organization founded in 2015 to support the development of effective therapeutics and eventual cures for CDD. Through robust grant and directed research programs, the Foundation provides tools and resources to basic and clinical scientists to enable the development of disease-modifying therapeutics for CDD. These programs include support for pre-clinical, translational, and clinical research into basic CDKL5 biology, CDD disease mechanisms, and the proof-of-concept studies for gene therapy and genome modifying therapeutics. Visit www.louloufoundation.org for more information.
