Pulse Infoframe

With the Pulse Platform, life sciences companies can target RWD needs to address unmet evidence generation needs, including creating an external control arm in #ClinicalTrials. pulseinfoframe.com/wp-content/upl… #RealWorldData #NaturalHistoryStudy #PricingReimbursement

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…

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…

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

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…

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

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…

#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/

Our founder and CEO, Dr. Femida Gwadry-Sridhar, is attending the 2nd Asia CDKL5 workshop in Japan September 21-22 as a speaker to give insights into the CDD registry, which uses the Pulse Platform. Scan the QR code to sign up virtually. #CDKL5 #CDD #CDKL5DeficiencyDisorder

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.

Our founder and CEO, Dr. Femida Gwadry-Sridhar, is attending the 2nd Asia CDKL5 workshop in Japan September 21-22 as a speaker to give insights into the #CDD registry, which uses the Pulse Platform. Attend virtually by scanning the QR code. #CDKL5 #CDKL5DeficiencyDisorder

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

@Polandsyndromep has released a new episode of their podcast, What About PS?: “Episode 5 - A Parent’s Perspective.” In the latest episode, they’re joined by Michelle Ridley, mom to Everleigh and Ailsa. You can listen here: pip-uk.org/what-about-ps #PolandSyndrome #WhatAboutPS

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