London Can. –January 13th 2025- Pulse Infoframe, an industry leader in global patient registries and real-world evidence generation has announced today that their three abstracts submitted to the WORLDSymposium have been accepted and will be presented February 3rd-7th 2025 in San Diego.
WORLD (We’re Organizing Research on Lysosomal Diseases) is the leading global conference for Lysosomal Storage Disorders (LSDs) research where experts come together to discuss the latest trends in the industry. The symposium provides an interdisciplinary platform to explore and discuss specific areas of interest, research, and clinical applicability related to lysosomal storage diseases. Facilitating collaboration and the advancement of knowledge in this field.
Pulse Infoframe has continued to expand its presence at the WORLDSymposium, reflecting its commitment to advancing lysosomal disease research. This year, Pulse will present three posters that represent a collaboration on a safety study, an advocacy perspective and patient preferences, highlighting the value of robust patient registries in driving scientific insights and innovation.
Poster Details:
Aligning Stakeholder Terminologies and Priorities in Clinical Trials to Enhance Outcomes for Lysosomal Storage Disorder (LSD) patients
Poster Code: LB-26
Poster Session: Basic Science & Late-Breaking (LB-01 – LB-34) Poster Session – Tuesday, February 4, 2025 15:30 to 17:30 PST.
The View from the Patient Advocate: Identifying and overcoming the challenges to collecting data from different LSD patient communities
Poster Code: LB-09
Poster Session: Basic Science & Late-Breaking (LB-01 – LB-34) Poster Session – Tuesday, February 4, 2025 15:30 to 17:30 PST.
Prospective Observational Study to Assess the Long-term Safety of Olipudase Alfa Effect in Pediatric Patients Less Than 2 Years of Age with Acid Sphingomyelinase Deficiency: Study Design
Poster was authored by our partners at Sanofi with support from the Pulse Infoframe team
Pulse Infoframe’s Head Development, Dan Lewi, is a renowned patient advocate, co-founder of the Cure and Action for Tay-Sachs (CATS) Foundation, and a subject matter expert on Tay-Sachs and other Lysosomal Storage Disorders. Dan emphasized the importance of this event in advancing the field:
“This work highlights our experience in rare diseases and our dedication to helping companies make a real difference for these communities. We’re passionate about driving research and treatment options forward, knowing that each step makes an impact.”
– Dan Lewi, Pulse Infoframe Head of Business Development & Patient Advocacy
Dan Lewi will be joined by Pulse Infoframe Founder & CEO Dr. Femida Gwadry-Sridhar at the WORLDSymposium and spoke on evidence generation in the field of Lysosomal Storage Disorders:
“ Evidence generation takes many forms and considers various perspectives. The work that we do at Pulse infoframe critically appraises relevant methodologies and data to consider what is important to patients, to optimize the drug development process.”
– Dr. Femida Gwadry-Sridhar, Pulse Infoframe Founder & CEO
Pulse Infoframe’s participation in the WORLDSymposium underscores its dedication to empowering researchers, clinicians, and patient communities with real-world evidence that drives innovation and improves patient outcomes. With deep expertise in both patient advocacy and data collection for LSDs and a commitment to collaboration, Pulse Infoframe is uniquely positioned to play a pivotal role in advancing understanding and treatment of these rare diseases through its comprehensive global patient registries.
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.
