Pulse Infoframe @pulseinfoframe
Accelerating science and research with real world evidence, from real patients, in real time. #realworldevidence #raredisease #cancer pulseinfoframe.com London, Ontario - Cambridge, MA - London, UK - Philadelphia, PA - Chennai, India Joined March 2011-
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Pulse Infoframe retweeted
Prof Trautwein is a professor at University Hospital @RWTH Aachen in Germany. He discusses the importance of early intervention in #PrimaryBiliaryCholangitis (#PBC), the challenges with diagnosis, the improved prognosis and unmet needs. rarerevolutionmagazine.com/digitalspotlig…
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Pulse Infoframe retweeted
LaToya’s diagnosis of #PrimaryBiliaryCholangitis (#PBC) explained her fatigue. Managing that symptom is a constant challenge that forces her to make compromises—which those closest to her can find hard. Here she explains how fatigue shapes her new normal rarerevolutionmagazine.com/digitalspotlig…
Pulse Infoframe retweeted
Special thanks to our wonderful contributors for providing their impactful perspectives on #PrimaryBiliaryCholangitis (#PBC) and to GSK for sponsoring this inspiring series. To access these #DigitalSpotlight articles, visit our site here: rarerevolutionmagazine.com/digital_spotli… #RareDisease
Pulse Infoframe retweeted
Robert Mitchell-Thain, CEO explains @PBCFoundation’s work driven by the goal that, one day, everybody will be able to access the care pathway that is right for them.#PBC #PrimaryBiliaryCholangitis #RareDisease #RareLiver rarerevolutionmagazine.com/digitalspotlig…
Pulse Infoframe retweeted
The care pathway and unmet needs in #PrimaryBiliaryCholangitis, a rare autoimmune disease of the liver: an interview and overview of #PBC with Prof Singal, professor at the University of South Dakota, Sanford School of Medicine, US. rarerevolutionmagazine.com/digitalspotlig… #RareDisease
Pulse Infoframe retweeted
Ingo van Thiel is a patient rep for @Leberhilfe e.V. (German Liver Aid). He explains the enormous value of listening carefully to what the #PBC community says about its unmet needs—even a single word can have the power to improve patients’ lives rarerevolutionmagazine.com/digitalspotlig…
Pulse Infoframe retweeted
#PrimaryBiliaryCholangitis (PBC) is a rare, long-term, potentially debilitating, autoimmune liver disease. Read more about the CHAPTER study collecting real-world data on the itch associated with rare liver disease. rarerevolutionmagazine.com/digitalspotlig… #PBC #RareDisease
Join our research partners from the Global Melanoma Research Network next week at the Society for Melanoma Research Congress at their poster (P-070) that showcases the real-world effectiveness of adjuvant systemic therapy in cutaneous melanoma. #MelanomaResearch #MelanomaSociety
Our Founder and CEO Dr. Femida Gwadry-Sridhar will be speaking at the #WODC2023 with @RareRevolutionM about the best strategies for study enrollment, patient engagement and recruitment Thursday November 2nd at 10:40 AM. @orphan_drugs #RareDisease
We will be presenting a new poster with data from our Global Melanoma Research Network (GMRN) at the Society for Melanoma Research congress next week. Stop by poster P-070 to learn about real-world effectiveness of adjuvant systemic therapy in cutaneous melanoma. #Melanoma
Today is #WorldNarcolepsyDay. We are committed to the narcolepsy community. You can find out more about our work with our partners and the CATNAP® registry here: pulseinfoframe.com/catnap/
Next in our Meet Our Team series is Katie Crosby, our clinical project manager. Katie is a certified genetic counselor with 10+ years’ experience in clinical care and rare disease research. She also worked in pharma planning a clinical trial for an ultra-rare disease.
Last year, data from our Global Melanoma Research Network were published in @CurrentOncology Learn more about how the #RealWorldData generated from the Pulse Platform helped researchers track the quality of immunotherapies here: mdpi.com/1523500
There are five important differentiators that we deliver in our evidence generation platform to overcome the challenges of multi-site, international deployment, and data collection. Learn more here: bit.ly/PulsePlatform #PatientRegistries #DataScience #SaaS
#Swifties rejoiced when Taylor Swift dropped #SpeakNowTaylorsVersion last month. Three songs on the album are #CPR worthy? “Sparks Fly” “Speak Now” and “Dear John” all fall between the necessary 100-120 BPM range to adequately perform CPR! Learn more here: simonsheart.org
Join @myrovlytis at this year's BHD and Folliculin Research Symposium on October 13 and 14, 2023. Tickets are available for both in-person and online attendance eventbrite.co.uk/e/bhd-and-foll… #KidneyCancer #Symposium #Research #Pneumothorax #LungHealth #BirtHoggDube
Do not overlook how you plan to use the data collected for your registry: data are a tool that actively contributes to your cause, not a toolbox of hundreds of tools you’ll never use. A #DataScientist can help: pulseinfoframe.com/2020/12/07/und… #DataScience #RealWorldData
Generating strong #RWE means leveraging a unique network of sites and KOLs to support medical therapy development and our integrated technology platform in 20+ disease areas including #Oncology, #RareDisease and #ChronicConditions. Visit pulseinfoframe.com for more info.
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RARE Revolution Magaz... @RareRevolutionM
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240 Followers 340 Following Medical research charity driven by our ambition to cure rare diseases We manage @BHD_Foundation & @OsteosarcomaNow #RareDisease #rarecancer
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85 Followers 29 Following A patient-led Forum and networking arena between Patient Organisations, Scientific Societies and Industry working in rare bone diseases
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185 Followers 127 Following Tweets by Christine White, President. #raredisease @NGFCanada
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3K Followers 1K Following A través de la investigación, luchamos por una cura del síndrome de #Dravet. @RetoDravet es nuestro equipo solidario, el más grande del mundo💜Trends for United States
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