Organizations Focused on Kidney Research Now Have Access to Single, Compliant Platform to Accelerate Discovery of Lifesaving Treatments for Kidney Community March 1, 2023, London, Ontario, Canada—Pulse Infoframe is expanding... read more →
PAB Members Have Both Experience in Healthcare and Patient Advocacy October 27, 2022, London, Ontario, Canada—To enhance the patient voice in real-world studies, Pulse Infoframe, a company that specializes in... read more →
Remote Participation Model Allows People to Enroll from Almost Anywhere in the World August 8th 2022, London, Ontario, Canada—Children with pediatric narcolepsy and their caregivers can now take part in a... read more →
Shattering Rare Disease Registry Recruitment Targets with PIP-UK Real-world data from registries and other real-world evidence sources remain a fertile ground of opportunity for advocacy groups and biopharma companies to... read more →
Research to focus on gene at “heart” of Timothy Syndrome March 24 , 2022, London, Canada—Timothy Syndrome Alliance (TSA) is creating a patient registry for the CACNA1C gene, which encodes... read more →
February 17, 2022, London, Canada—The Myrovlytis Trust is creating a patient registry for Birt-Hogg-Dubé Syndrome (BHD) to better understand the epidemiology of the disease, its prevalence, and the disease trajectory,... read more →
Waltham, MA, December 9, 2021 – A collaboration between Cytel and Pulse Infoframe creates a solution that marks a new direction in research for rare disease. This partnership will support... read more →
London, Canada, November 18, 2021—Pulse Infoframe and the Loulou Foundation have announced a collaboration to leverage Pulse Infoframe’s novel globally unique identifier (GUID) model to enable linkage of data from... read more →
London, Canada and Tucson, Ariz., U.S. (September 29, 2021) – Critical Path Institute (C-Path) and Pulse Infoframe announced today their collaboration to advance technologies and tools to further rare disease... read more →
Breaking Down Silos to Accelerate Research for Rare Kidney Disease London, Canada; Scottsdale, United States (September 7, 2021)—Alport Syndrome Foundation and Pulse Infoframe are pleased to announce that the advocacy... read more →
