Our staff has grown in recent months as we help more organizations use real world evidence to find effective treatments for rare diseases. Paul Ferraiolo: Chief Innovation Officer Paul brings... read more →
Our newest customers provide further examples of how real world evidence (RWE) in healthcare is used. Uveal Melanoma Registry This is the first-of-its-kind, global registry to use real RWE in... read more →
by Joe Ternullo Patients as Partners conferences are the only conferences in the US and Europe dedicated to demonstrating how to systematically involve patients throughout the entire drug development life... read more →
by Joe Ternullo I just returned from Rare Disease Week on Capitol Hill, a spectacular and unique event that Pulse Infoframe was privileged to support. Over 500 patient advocates trekked... read more →
Eleven centers to capture patient-reported outcomes about rare form of eye cancer March 4, 2019, Oxford, England & Conshohocken, PA & Rockville, MD & ON, Canada — Immunocore Limited, a... read more →
This summer, Pulse welcomed: Friedreichs Ataxia Research Alliance (FARA), a non-profit organization dedicated to curing Friedreich’s Ataxia and the related ataxias. The FARA registry will facilitate dialogue between the public and scientific... read more →
Supporting this growth, Pulse Infoframe has added more specialist staff and moved to new, larger offices to better support its clients. In 2018, Pulse Infoframe attended, presented or exhibited at Patients as... read more →
We have some exciting updates on two Pulse Infoframe registries. Pan-Canada Cancer Registry The success of the Canadian Melanoma Research Network, powered by Pulse and currently encompassing 10 major Canadian cancer... read more →
Proving the power of global collaboration, the Castleman Disease Collaborative Network, an initiative dedicated to accelerating research and treatment for Castleman disease, convened 42 experts from 10 different countries to establish the first-ever treatment guidelines for idiopathic... read more →
Empowering 76,000 Clinicians in Australia With New Patient Insights The voice of NSW's 7 million citizens is rising thanks to NSW's forward-thinking leaders committed to improving patient care across Australia's... read more →
