Ensuring No Duplicates: Implementing a GUID Model to Transfer and Link Patient Data from Study to Registry for Rare Disease Pulse Infoframe and the Loulou Foundation will leverage Pulse Infoframe’s novel globally unique identifier (GUID) model to enable linkage of data from the CANDID clinical study. LEARN MORE     
Pulse Infoframe and C-Path Establish Patient-Centered Data Harmonization Partnership Critical Path Institute (C-Path) and Pulse Infoframe are collaborating to advance technologies and tools to further rare disease research and drug development. LEARN MORE      Alport Syndrome Foundation Joins Pulse Infoframe’s healthie™ Kidney Disease Patient Registry Breaking Down Silos to Accelerate Research for Rare Kidney Disease
PIP-UK to Celebrate Poland Syndrome Community Register Project at Annual Family Conference PIP-UK is joining Rare Central, the rare disease platform powered by Pulse Infoframe, to create the UK Poland Syndrome Community Register LEARN MORE      Partnering with QualityMetric Pulse Infoframe and QualityMetric Partner to Develop Novel Rare Disease Solution Providing rare disease communities, researchers and drug developers with scientific and disease-specific surveys & instruments to support global research initiatives
Pulse Infoframe Partners with Leading AI Company Quinten Health To advance precision medicine through RWE generation. LEARN MORE      Image depicting hikers reaching the top of a mountain at sunset with a woman narrator in front for Video FAQs. PULSE INFOFRAME LAUNCHES VIDEO FAQ SERIES Pulse answers questions from the patient communities in a series of Q&A videos. Gain insights into building global registries, real-world data, evidence generation and more.

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.


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.

Evidence CentralRare CentralCOVID 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 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.

Pulse Infoframe's healthie 2.0 logo displayed in the screen of a mobile phone
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.

The Latest from Pulse Infoframe

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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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