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 cycle. They aim to improve efficiency in clinical research and speed lifesaving, quality-of-life-improving therapies to those in need. Dr. Femida... read more →
Apr
12
Mar
18
For Julian Summers, it was a long time coming. For his brother John it was too late: he had passed away a year ago, succumbing to Alstrom Syndrome. What could have been done to save him? In December 2018, the FDA published a Framework for its Real-World Evidence (RWE) Program. Among other... read more →
Mar
13
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 to Washington, D.C., last week for this extraordinary event that has grown steadily since the inaugural annual event in 2010.... read more →
Mar
04
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 leading T cell receptor biotechnology company, and Pulse Infoframe Inc. (Pulse), with a platform healthie™ that supports patient registries, data... read more →
Feb
12
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 communities globally and promote information exchange that drives medical advances. Myonexus Therapeutics, a clinical stage gene therapy company focused on treating distinct... read more →
Feb
12
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 Partners, BIO2018, CDKL5 Forum, ESMO 2018 Congress, World Orphan Drug Conference, HIMSS2018, Society for Participatory Medicine Conference, DPharm and more.... read more →
Feb
12
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 centres of excellence, has resulted in a series of discussions to expand the registry to include breast, lung, prostate, and... read more →
Feb
12
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 Multicentric Castleman Disease, based on data from over 300 iMCD patients. This landmark study was pre-published in Blood, the top hematology journal in the world.... read more →
Feb
12
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 largest health system. There is a lot of health care innovation in Australia where there has been a strong focus on... read more →
Oct
25
Patient Portals, Evidence-Based Patient Reported Outcome Measures, Health Registries, Real Time Analytics, & Data Visualization Capabilities Offering Augments Member Benefit (Boston, Mass. and London, Ont., Oct 25, 2017) Senior executives from the Society for Participatory Medicine, the preeminent organization in promoting true partnerships between patients and healthcare professionals, and Pulse... read more →
