Pulse Infoframe

Accelerating science and research with real world evidence, from real patients, in real time. #realworldevidence #raredisease #cancer

[Pulse Infoframe @pulseinfoframe]

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.
https://t.co/XWnRMt50Q0
#RealWorldData #NaturalHistoryStudy #PricingReimbursement

[RARE Revolution Magazine® @RareRevolutionM]

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.
https://t.co/8DnfsdTwuC

[RARE Revolution Magazine® @RareRevolutionM]

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
https://t.co/9drkkukkQK

[RARE Revolution Magazine® @RareRevolutionM]

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: https://t.co/7b1k6fNLz5
#RareDisease

[RARE Revolution Magazine® @RareRevolutionM]

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 https://t.co/MwbeYjpQnj

[RARE Revolution Magazine® @RareRevolutionM]

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. https://t.co/pgN5OVnng1
#RareDisease

[RARE Revolution Magazine® @RareRevolutionM]

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 https://t.co/o6OOehWVE7

[RARE Revolution Magazine® @RareRevolutionM]

#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.

https://t.co/wRwjYn00zX
#PBC #RareDisease

[Pulse Infoframe @pulseinfoframe]

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

[Pulse Infoframe @pulseinfoframe]

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

[Pulse Infoframe @pulseinfoframe]

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

[Pulse Infoframe @pulseinfoframe]

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: https://t.co/1RMcPJTt4u

[Pulse Infoframe @pulseinfoframe]

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

[Pulse Infoframe @pulseinfoframe]

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.

[Pulse Infoframe @pulseinfoframe]

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

[Pulse Infoframe @pulseinfoframe]

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: https://t.co/JpgSxq3UUm

[Pulse Infoframe @pulseinfoframe]

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: https://t.co/U87q3esjV5
#PatientRegistries #DataScience #SaaS

[Pulse Infoframe @pulseinfoframe]

#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: https://t.co/RiQNmWifLe

[Pulse Infoframe @pulseinfoframe]

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 https://t.co/miXolBJPYC #KidneyCancer #Symposium #Research #Pneumothorax #LungHealth #BirtHoggDube

[Pulse Infoframe @pulseinfoframe]

@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: https://t.co/eOblJhCTrY

#PolandSyndrome #WhatAboutPS

[Pulse Infoframe @pulseinfoframe]

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:
https://t.co/4KcYfHuf2r
#DataScience #RealWorldData