In July, Pulse Infoframe CEO Dr. Femida Gwadry-Sridhar chaired the 10th Annual Orphan Drugs & Rare Diseases – West Coast Conference in San Francisco and delivered a keynote talk on the role of real-world evidence and natural history studies in targeting better drug development. In September, Femida participated in the... read more →
Oct
16
Sep
09
We’re excited to share that Dr. David Fajgenbaum, a friend and collaborator of Pulse InfoFrame and PI of the ACCELERATE registry which is powered by Pulse, is sharing his amazing story of discovering a drug to treat his rare disease, which is extending his and other #CastlemanDisease patients’ lives. His book, Chasing My... read more →
Jul
22
Patient-reported data will help inform research in rare form of eye cancer Immunocore Limited, a leading T cell receptor biotechnology company, and Pulse Infoframe, Inc. (Pulse), a data aggregation and analytics company, today announce plans to support the first global patient registry in uveal melanoma (UM), a rare and aggressive... read more →
May
31
Here are a few highlights of our travels from the past few months. Dr. Durhane Wong-Rieger (L), President of the Canadian Organization for Rare Disorders (CORD), and our Dr. Femida Gwadry-Sridhar (R). Pulse Infoframe has just returned from the Great Plains Rare Disease Conference in Sioux Falls, spoken at Patients... read more →
May
30
Several of our clients have celebrated some huge successes this season. Take a look! Simon’s Heart Since 2011, Simon's Heart has advocated for the Sudden Cardiac Arrest Prevention Act. In May, Georgia and West Virginia became the 13th and 14th states, respectively, to pass the Sudden Cardiac Arrest Prevention Act,... read more →
May
30
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 over 30 years’ experience to Pulse Infoframe. His previous experience includes Chief Architect of the Oracle Cancer Research Cloud initiative,Chief... read more →
May
30
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 the discovery of new treatments for uveal melanoma, a rare cancer of the eye. This initial rollout is supported by... read more →
Apr
12
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 →
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 →