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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Mar
28
The Myrovlytis Trust, BHD Foundation, and Pulse Infoframe are pleased to announce that the BHD International Registry is open for recruitment. What Is Birt-Hogg-Dubé Syndrome? Birt-Hogg-Dubé (BHD) syndrome is a rare, inherited condition that is characterized by the development of benign skin tumors (fibrofolliculomas), pulmonary cysts, collapsed lung (pneumothorax), and...
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Mar
24
Research to focus on gene at “heart” of Timothy Syndrome March 24 , 2022, London, Canada—Timothy Syndrome Alliance (TSA) is creating a patient registry for the CACNA1C gene, which encodes the alpha-1-subunit of a voltage-dependent L-type calcium channel highly expressed in the heart and brain. To better understand the impact...
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Mar
21
https://www.youtube.com/watch?v=8lN9cJ841wA&list=PLQbiN4husqo975yJFrtk6PYuachpvitr5&index=19 International Rare Disease Showcase, February 1-3, 2022You start with strategy first - know why you want this, even if you don’t know what it might look like Then you think about technology, not just for today, but also for the future. Next up, it’s all about engagement - if...
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