Real World Evidence Posters, Case Studies & Research
Explore real world evidence from melanoma research, including patient characteristics, treatment patterns, and outcomes captured through real world data.
Presented at the 2026 ASCO Annual Meeting
Leveraging Real-World Evidence for Rare Disease and Oncology HTAs: Insights from Pulse Infoframe’s Hybrid Approach
Presented at the 2025 HTAi Annual Meeting
Explore real world data from the Alport Patient Registry, a decentralized longitudinal study designed to better understand the experiences and outcomes of people living with Alport syndrome.
Presented at the 2025 American Society of Nephrology Kidney Week.
Aligning stakeholder terminologies and priorities in clinical trials to enhance outcomes for Lysosomal Storage Disorder (LSD) patients.
Presented at the 2025 WORLD Symposium
Explore real world data from the Global CDKL5 Registry, examining the diagnostic journey, seizure burden, and quality of life among patients with CDKL5 deficiency disorder.
Presented at ISPOR 2024
Learn about the characteristics and outcomes of early vs. late Uveal Melanoma recurrence.
Presented at the Society of Melanoma Research Congress 2024.
Learn about the burden of pediatric narcolepsy on patients and their caregivers.
Presented at the 2024 International Pediatric Sleep Association Annual Meeting.
Learn about our novel approach to collecting data for GM2 gangliodosis.
Presented at the 2024 WORLD Symposium
The View from the Patient Advocate: Identifying and overcoming the challenges to collecting data from different LSD patient communities.
Presented at the 2025 WORLD Symposium
Read about the impact of collecting real-world data for CACNA1C related disorders from the CACNA1C Community Registry (CCR).
Presented at the 2024 Genomics England Research Summit
Read about the Alport Patient Registry, launched in August 2023. It is a decentralized, longitudinal study.
Presented at the 2024 American Society of Nephrology Kidney Week.
Read about how machine learning and artificial intelligence helped determine treatment choices for melanoma patients.
Presented at ISPOR 2023
Learn about our single platform approach strategy and how it enables the integration of prospective and retrospective data.
Presented at ISPOR 2023
Read about how PIP-UK and Pulse Infoframe enabled rapid recruitment to the Poland Syndrome Community Register.
Read about how our patient advisory board thinks data collection can be improved for patient advocates and their communities.
Presented at the World Orphan Drug Congress 2023
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
Presented at 2025 WORLD Symposium
Explore findings from the Pan Canadian Lung Cancer Observational Study (PALEOS), using real world data to better understand lung cancer patient outcomes and treatment patterns.
Presented at IASLC World Conference on Lung Cancer 2024
Learn about how our decentralized hybrid recruitment strategy has helped the CATNAP pediatric narcolepsy registry grow and improve researchers understanding of the disease.
Presented at APSS SLEEP 2023
Read about how our decentralized approach has led to more diverse participant populations in our registries and studies.
Presented at ISPOR 2023
Learn how patient registry data can generate real world evidence on disease characteristics, treatment patterns, and outcomes across the patient journey.
Read about how additional datasets were added to a pre-existing CDKL5 patient registry through the use of a global unique identifier (GUID).
Product Sheets
Explore our PBC case study to see how Pulse Infoframe applied a patient-first framework to capture real-world experiences, empower participants, and deliver a scalable model for rare disease research.
