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Ataxia & Me
Bowel Cancer Australia

Bowel Cancer Australia (BCA) is an NGO dedicated to supporting and improving treatments for bowel cancer patients, the third largest killer (by cancer) in Australia. To this end, BCA worked with ICHOM (the International Consortium of Health Outcome Measures) and Pulse Infoframeto develop and implement a Bowel Cancer PROM and colonoscopy PREM to be delivered country-wide. In addition, BCA has commissioned Pulse Infoframe to create an eCommerce platform that, encouraged by BCA and/or patients, relevant physicians can sign up to take part in the PROM solution. Pulse Infoframe will be assisting BCA in marketing this solution to the healthcare sector.

Castleman Disease Collaborative Network

For a world-class major US academic healthcare system, Pulse Infoframe has created a complex, global, rare disease registry solution for Castleman Disease, a debilitating disease of lymph nodes and related tissues that can affect many of the body's vital organs. Little is known about this disease, including the number of people afflicted. Working with Dr David Fajgenbaum, we have created a registry which collects more data than almost all other registries in the world. There are now approximately 140,000 data points in system (~3000 data points per patient fully entered). The driving need is to collect enough data so that the medical community can identify the right drug for a particular patient based on their clinical parameters. CDCN is currently deployed at 10 global sites.

CDKL5 Alliance
EveryLife Foundation
Friedreich's Ataxia Research Alliance

In 2018, Pulse Infoframe welcomed FARA, a non-profit organization dedicated to curing Friedreich's Ataxia and the related ataxias, to the healthieTM platform. The FARA registry will facilitate dialogue between the public and scientific communities globally and promote information exchange that drives medical advances. Pulse Infoframe will be involved in expanding this registry globally.

Global Genes

healthieTM powers the Global Melanoma Research Network (GMRN), which is deployed in virtually every major cancer center in Canada. These data are used in real-world evidence research and trial resulting in new insights and treatment protocols. Findings have been presented at major international scientific meetings and published in peer reviewed journals. The GMRN was the first of Pulse Infoframe's consortia implementation, created in 2011 and still adding new members. For the implementation of this gold standard registry, which currently links 12 clinical research centers across Canada, Pulse Infoframe brokered funding from an initial 3 pharmaceutical companies, later extending to 5 as the network expanded. In this instance, a non-profit legal entity was created to host the network, and Pulse Infoframe provided the SaaS serving and other support functions. Separate legal agreements are established with each site and, as with all of our rgistries, IRB approval is obtained.

Global Melanoma Research Network
Hyper IgM Foundation
Immunocore
LouLou Foundation
Myositis Support and Understanding
National Kidney Foundation

In May 2019, the NKF and Pulse Infoframe announced a comprehensive plan to develop the first-ever national registry for patients at all stages of CKD called the NKF Patient Network. The NKF Patient Network will create an interactive community of chronic kidney disease patients that link patient-entered data on their health history, outcomes and preferences with clinical and laboratory data obtained from electronic health records. This unique combination of data collected will enable individualized educational resources, research, clinical care and health policy decisions to be centered on the patient. There will be a comprehensive collection of patient data which will enable better design of patient education resources, more targeted care and more patient-centered clinical trials to discover new treatments for the disease. Data collected in the NKF Patient Network will include demographics, medical history, diet, lifestyle, kidney disease stage and information about related comorbidities (such as heart disease, hypertension, diabetes), laboratory values for diagnostic tests, and medications. Pulse Infoframe is actively working with the NKF to link advocacy groups (and patients), hospitals and health systems, and researchers.

New South Wales: Agency for Clinical Innovation

There is a lot of patient focused health care innovation in Australia, and patients take center stage in New South Wales (NSW) where the voice of NSW's 7 million citizens, which represents more than a quarter of Australia's population, is being heard thanks to NSW's forward-thinking commitment to improving patient care across Australia's largest health system. Pulse Infoframe was selected to implement, and support patient reported outcome measures (PROMs) and patient experience measures (PREMS) to the healthcare delivery organizations throughout that state. In this multiyear project, we have been working with government ministers, healthcare agencies, the central IT delivery organization, physicians, other clinicians and patients. Pulse Infoframe has developed and runs the platform to deliver evidence-based, clinically validated PROMs and PREMs across the entire state health system. In this first-of-its-kind initiative globally, working with NSW Agency for Clinical Innovation and eHealth NSW, we are deploying an initial 15 different PROMs and PREMs, empowering over 76,000 NSW clinicians with patient insights.

New South Wales Health
Rare Revolution Magazine
Salem Oaks Consulting
Simon's Heart

Sudden cardiac arrest takes the lives of thousands of students every year. It is the #1 cause of death of student athletes. Pulse Infoframe developed and maintains the Simon's Heart (aka "Simon's Fund") national youth cardiac registry of seemingly healthy children, HeartBytes, established to address the void of scientific cardiac data on children and to serve as "a public library for qualified researchers," providing de-identified data free of charge for research. Simon's Heart has screened over 15,000 children and changed the lives of over 100 of them.

Society for Participatory Medicine
The Jansen's Foundation
TREND Community
Two Disabled Dudes Podcast