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We partner with industry & advocacy to support the Patient Journey
Driven by Science
We do not outsource our science. We have an in-house team at Pulse Infoframe whose research and epidemiological expertise is the foundation of everything we develop. They help address the research questions that are top of mind for patients.
Focused on Collaboration
We develop trusted relationships with leading researchers, key opinion leaders, advocacy groups, and data partners to deepen our expertise and advance data collection from an ever-expanding number of sites, stakeholders, and data sources.
Present around the World
Our platform adjusts to your needs, wherever in the world members of your community reside and however your needs change. Our time-tested, compliant consenting and governance procedures allow researchers worldwide to access the data your community chooses to share.
ACCELERATING SCIENCE, RESEARCH & DRUG DISCOVERY
Pulse Infoframe provides a full solution for registries, natural history studies, and a range of other observational and regulatory grade studies. We design, launch, and implement global registries, with embedded and dynamic consent models, data standardization to OMOP (required for global studies), and data compliance. We have relationships with providers for patient access, and our model ensures that insights, evidence, and publication results are disseminated across the ecosystem.
Learn more about how we work with pharma through Evidence Central and how we partner with patient advocacy groups through Rare Central.
For the first time, we will have a comprehensive collection of patient data which will enable us to better design patient education resources, more targeted care, and more patient-centered clinical trials to discover new treatments for the disease. There is no other kidney disease registry in the world that combines patient-entered data with data from electronic health records, and this pivotal combination will provide us with a 360-degree view of the patient we are working to help.
Dr. Kerry Willis
Chief Scientific Officer at the National Kidney Foundation
My colleagues and I are committed to the development of a prospective pediatric narcolepsy registry to better define and delineate this disorder that is made all the more challenging due to its relative rarity and its frequent under- and misdiagnosis.
Dr. Judith Owens
Professor of Neurology at Harvard Medical School & Lead of the Scientific Advisory Board for the CATNAP™ Pediatric Narcolepsy Registry
The rarity of uveal melanoma makes it difficult to collect the data needed to better understand how the disease manifests and evolves, and who is likely to respond to treatment and why. For the first time, we’ll have the opportunity to prospectively collect and analyze global real-world data, including patient-reported outcomes. This will help to guide medical research, innovative trial design and recruitment, potentially paving the way for accelerated treatment advances.
Dr. Richard Carvajal
Director of Experimental Therapeutics & Director of the Melanoma Service at Columbia University Medical Center
Experienced Team
The team at Pulse Infoframe brings decades of research, epidemiology, and operational experience from organizations like ConcertAI, Oracle (Cancer Research Cloud), PatientsLikeMe, CureForward, Salesforce, N-of-One, Apple, Optum, and Brigham & Women’s Hospital. As a team, we have 200+ peer reviewed publications.
Global Principal Investigator Network
Our technology platform enables the structured collection of data that is mapped to Observational Medical Outcomes Partnership (OMOP), mCode, and others. We make ensure the data captured allows for consented data-sharing permissioning across stakeholders and meets regulatory standards required by the FDA and EMA.
Pulse Infoframe’s healthie™ Platform
Our evidence generation platform engages patients, caregivers, study coordinators, advocates, and industry. It includes consent management, library with educational materials, repository of patient reported outcome measures, and natural and disease-specific data elements that can be easily deployed.
Globally Compliant Platform
Our technology platform enables the structured collection of data that is mapped to Observational Medical Outcomes Partnership (OMOP), mCode, and others. We make ensure the data captured allows for consented data-sharing permissioning across stakeholders and meets regulatory standards required by the FDA and EMA.
Track Record
Since Pulse Infoframe’s inception, we have leveraged our deep domain expertise to develop the industry’s most robust evidence generation platform and support longitudinal prospective studies and registries in over 25 diseases such as melanoma, lung cancer, and CDKL5 in partnership with over 10 global pharma partners seeking to understand natural history of disease, treatment effectiveness, and burden of illness. In short: We know our stuff.
Cancer, Rare Disease, Chronic Disease
These are the domains we specialize in and for which we’ve developed a platform to help your community around the world collect and share its data and lived experiences. More voices equals stronger advocacy and a greater possibility for the development of effective treatments.
Our Latest Posts
Catch up on what’s new at Pulse Infoframe or dive deeper into what we do. Our latest blog posts are below.
Pulse Infoframe and Timothy Syndrome Alliance (TSA) to Present New Poster at Genomics England Research Summit
London On. July 9th – The Timothy Syndrome Alliance (TSA) and Pulse Infoframe will present a new poster at... read more →
July 9, 2024
Pulse Infoframe Announces Poster Presentation at ISPOR 2024
London On. –May 1st 2024- Pulse Infoframe, an industry leader in global patient registries and real-world evidence generation has announced... read more →
May 1, 2024
Pulse Infoframe Announces New Scientific Advisory Board, Further Advancing Real-World Evidence Generation Across Pharma Industry
London, Canada, April 15th, 2024— Pulse Infoframe, is delighted to announce the establishment of its Scientific Advisory Board (SAB).... read more →
April 15, 2024
Advancing GM2 Gangliosidosis Research: A Revolutionary Approach to Real-World Data Collection
Poster presentation at 20th World Symposium: A paradigm shift in collecting RWD for GM2 gangliosidosis. Collecting real-world data (RWD) for... read more →
February 8, 2024
Endo Announces First Patient Enrolled in Registry of Peyronie’s Disease
DUBLIN, July 17, 2023 – Endo International plc (OTC: ENDPQ) announced today that the first patient has been enrolled in CURVE-PD... read more →
July 21, 2023
Endo Announces First Patient Enrolled in Registry of Dupuytren’s Contracture
DUBLIN, June 26, 2023 /PRNewswire/ -- Endo International plc (OTC: ENDPQ) announced today that the first patient has been enrolled... read more →
June 30, 2023
Our Purpose
Deployed globally and focused on cancer, rare and chronic diseases, Pulse Infoframe is a real-world evidence generation, health informatics and insights company that has created a technology and services platform designed to extract, curate, analyze and disseminate evidence-based conclusions that improve the quality of people’s lives.
Our Mission
With patients at the core, our mission is to promote global alliance and the secure collection and sharing of real-world evidence to accelerate scientific research and the delivery of new therapeutic products to market.
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