How Pulse Infoframe’s Newest Customers Collect Real World Evidence (RWE)

Our newest customers provide further examples of how real world evidence (RWE) in healthcare is used.

National Kidney Foundation Patient Network

The National Kidney Foundation just announced the first-ever interactive patient registry community for chronic kidney disease. Patients will enter data on their own health history, outcomes, and preferences. These data will be linked with clinical and laboratory data from electronic health records to help deliver individualized educational resources, research, clinical care insights, and health policy decisions centered on the patient. You can learn more here.

National Kidney Foundation Logo

Uveal Melanoma Registry

This is the first-of-its-kind, global registry to use real RWE in the discovery of new treatments for uveal melanoma, a rare cancer of the eye. This initial rollout is supported by Immunocore, and project collaborators include New York’s Columbia University, Australia’s St. Vincent’s Hospital, and the UK’s University of Liverpool.

Pan-Canadian Lung Cancer Observational Study Registry

Shortened to PALEOS, this registry will help researchers and health care professionals understand the natural history of lung cancer rare molecular alterations/subtypes, generate RWE for these forms of cancer, and help distinguish between them. This information will be invaluable in the discovery of new treatments.

Agency for Clinical Innovation (ACI), NSW Health

Raj Verma, ACI’s Executive Director System Transformation, Evaluation and Patient Experience, talked about the HOPE System, which is the Pulse PROMs and PREMs implementation in New South Wales (NSW) Health, at the ICHOM Value Based Health Care conference held in Rotterdam earlier this month. Melissa Tinsley, ACI’s Health Outcomes Manager, delivered a half-day workshop focused on the HOPE System to health care professionals in April.

Agency for Clinical Innovation (ACI), NSW Health Logo

To learn more about how companies and organizations around the world are using real world evidence in healthcare, contact us.

This story first appeared in our May 2019 newsletter. Get Pulse Infoframe news delivered to your inbox. Email us to sign up today.