Feb
27
Organizations Focused on Kidney Research Now Have Access to Single, Compliant Platform to Accelerate Discovery of Lifesaving Treatments for Kidney Community March 1, 2023, London, Ontario, Canada—Pulse Infoframe is expanding its kidney initiative into a collaborative global kidney platform. This initiative will leverage the company’s existing kidney platform, which has...
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Feb
17
As our February newsletter has highlighted, collecting real-world oncology data to produce regulatory-compliant and reproducible evidence for your medical research is possible. The Pulse Platform Our modular-by-design platform enables you to address your study’s research questions in the following ways: By accessing existing de-identified data sets from our ongoing registries,...
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Nov
07
PAB Members Have Both Experience in Healthcare and Patient Advocacy October 27, 2022, London, Ontario, Canada—To enhance the patient voice in real-world studies, Pulse Infoframe, a company that specializes in real-world data (RWD) and evidence (RWE), announces the creation of a patient advisory board (PAB). The PAB held its first...
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Oct
19
by Dr. Femida Gwadry-Sridhar Have you ever considered the connection between drug development for rare diseases and olive trees in Italy? I assure you, there is one. In September, I had the honor of presenting with a panel of peers at a Rare Revolution webinar on early access programs (EAPs)....
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Aug
08
Remote Participation Model Allows People to Enroll from Almost Anywhere in the World August 8th 2022, London, Ontario, Canada—Children with pediatric narcolepsy and their caregivers can now take part in a patient registry to help researchers and clinicians better understand the condition. Pulse Infoframe, which specializes in patient registries for rare...
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Jul
21
Shattering Rare Disease Registry Recruitment Targets with PIP-UK Real-world data from registries and other real-world evidence sources remain a fertile ground of opportunity for advocacy groups and biopharma companies to accelerate rare disease research and better characterize and manage these diseases, their progression and treatment. Historically, the barriers to maximizing...
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Jun
09
A Collaborative Partnership to Develop the CDKL5 Registry CDKL5 Deficiency Disorder (CDD) is a rare developmental encephalopathy with epilepsy that is caused by mutations in the CDKL5 gene. CDD can manifest in a broad range of clinical symptoms and severity. The hallmarks are early- onset, intractable epilepsy and neurodevelopmental delay...
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May
25
Timothy Syndrome Alliance and Pulse Infoframe are pleased to announce that the CACNA1C Community Registry is open for worldwide recruitment. The registry will aid in research for Timothy Syndrome, non-syndromic Long QT Syndrome 8, and other CACNA1C-related disorders. What Is the CACNA1C Gene? The CACNA1C gene encodes the alpha-1-subunit of...
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Apr
07
https://youtu.be/alcE_FiOkAc Pulse Infoframe | Femida Gwadry-Sridhar, Founder & CEODr. Femida Gwadry-Sridhar is the founder and chief executive officer of Pulse Infoframe. Dr. Gwadry-Sridhar is a pharmacist, epidemiologist and methodologist with over 25 years of experience in clinical trials, health analytics, clinical disease outcomes, and registries.
Apr
06
You would think that, after 22 years in the U.S. Navy, a veteran deserves a break. But like a baseball game, life doesn’t go as planned for many, and it didn’t for Dan “Dry Dock” Shockley. But this isn’t a story with a sad ending. Yes, it starts with a...
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