We Do Data Right.


accelerating

your clinical
research


centralizing

your real-world data


decreasing

your R&D
start-up time

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Timothy Syndrome Alliance & Pulse Infoframe Collaborate on Registry for Rare CACNA1C-Related Disorders

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Ensuring No Duplicates: Implementing a GUID Model to Transfer and Link Patient Data from Study to Registry for Rare Disease

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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 healthie™ 2.0 and how we partner with patient advocacy groups through Rare Central.

healthie™ 2.0Rare Central
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 sure 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.

Read what our registry partners are saying about us!

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