By Dr. Femida Gwadry-Sridhar It is astounding when you think about rare diseases and then you hear about rare epilepsies. Sadly, they are really not that rare in the larger... 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 →
by Dr. Femida Gwadry-Sridhar The FDA recently released guidance on how to characterize real-world data (RWD). I am really glad they have now explained data standards are important and why... read more →
Cytel and Pulse Infoframe Deploy New Real-World Data Solutions to Transform Rare Disease Research Landscape
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 →
Pulse Infoframe and C-Path Establish Patient-Centered Data Harmonization Partnership to Accelerate Collaborative Research in Rare Disease
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 →
August 12, 2021, London, Canada—PIP-UK is joining Rare Central, the rare disease platform powered by Pulse Infoframe, to create the UK Poland Syndrome Community Register. The PIP UK charity will... read more →
https://www.youtube.com/watch?v=mGtwX6CcKHs Drug Repurposing for Rare Diseases 2021, June 15-16. Brought to you by Findacure.
Pulse Infoframe specializes in generating real-world data (RWD) that can be used to create real-world evidence (RWE). In this article, we will discuss how pharma companies can access real-world evidence... read more →
London, Canada; Rhode Island, United States (June 24, 2021) - QualityMetric and Pulse Infoframe announced today their partnership and vision to create the first scientifically validated rare disease instruments across... read more →
https://www.youtube.com/watch?v=vwUBqCN1EP8 What is an international registry, and why is it important?