Shattering Rare Disease Registry Recruitment Targets with PIP-UK Real-world data from registries and other real-world evidence sources remain a fertile... read more →
A Collaborative Partnership to Develop the CDKL5 Registry CDKL5 Deficiency Disorder (CDD) is a rare developmental encephalopathy with epilepsy that... read more →
Timothy Syndrome Alliance and Pulse Infoframe are pleased to announce that the CACNA1C Community Registry is open for worldwide recruitment.... read more →
You would think that, after 22 years in the U.S. Navy, a veteran deserves a break. But like a baseball... read more →
The Myrovlytis Trust, BHD Foundation, and Pulse Infoframe are pleased to announce that the BHD International Registry is open for... read more →
By Dr. Femida Gwadry-Sridhar It is astounding when you think about rare diseases and then you hear about rare epilepsies.... read more →
Visiting a UNESCO World Heritage Site is an incredible experience. Last December, I visited Teotihuacán in Mexico. The pyramids in all... read more →
by Dr. Femida Gwadry-Sridhar The FDA recently released guidance on how to characterize real-world data (RWD). I am really glad... read more →
Pulse Infoframe specializes in generating real-world data (RWD) that can be used to create real-world evidence (RWE). In this article,... read more →
Like a hockey player to a gaping net, Nina Liu was drawn to the gap in important data that could... read more →
