Top Tweets for #TheInchstoneProject
Excited to share this publication from #TheInchstoneProject ! It describes challenges with adopting extant non-seizure outcome measures for DEEs and considerations for measure modification. The figures are my favorite part! @ConeckerGabi @DEE_Pconnection
https://t.co/IOZgh1CCGg
This paper is a wonderful step forward towards understanding meaningful change in functional outcomes in @FamilieSCN2A! So grateful to be a part of #TheInchstoneProject !
What Does Better Look Like? Our Inchstone Project
partnered with @FamilieSCN2A to ask what meaningful changes demonstrate improved quality of life & to document what matters to those with severe DEEs and their families. https://t.co/loedzwCvXq
Thanks to the #SCN2A families!
Learning from some amazing clinicians, researchers, and families at the @LGS_Foundation Meeting of the Minds! #TheInchstoneProject @DEE_Pconnection
Thank YOU @FamilieSCN2A for participating and collaborating in this work and for a great conference! #TheInchstoneProject @DEE_Pconnection
Thank you to Anne Berg and @natashanludwig for presenting at the #SCN2Aconference on measuring meaningful change in our profoundly affected #SCN2A community. They presented data from the CTRS and @DEE_Pconnection #Inchstone Project!
#MoreThanSeizures
Day 1 of @FamilieSCN2A Conference covered everything from ion channels to clinical trial decision making! Was happy to share #TheInchstoneProject data with the families. I learned a lot today! Also, I am ALL ABOUT my new Ninja Turtles SCN2A patch! ππΌ ππΌππΌ
Had a great time today at the @KennedyKrieger Gary W. Goldstein Research Symposium! Got to share about #TheInchstoneProject and hear about research from trainees and phenomenal colleagues like @NeuRo_Ng on her groundbreaking work with @KAT6foundation!!! π§
We are so excited about the progress of #TheInchstoneProject, a project of @DEE_Pconnection that is working collaboratively to ensure #clinicaltrials are inclusive of those severely impacted by disease. We are thrilled to have you and JayEtta sharing our work at ETDD!
Looking forward to my first ETDD meeting and participating in discussions about novel approaches to expedite epilepsy therapies to patients. I will be sharing information about the #theinchstoneproject and data gathered at @FamilieSCN2A 2022 this afternoon!
Looking forward to my first ETDD meeting and participating in discussions about novel approaches to expedite epilepsy therapies to patients. I will be sharing information about the #theinchstoneproject and data gathered at @FamilieSCN2A 2022 this afternoon!
Had a great time at my first @gatlinburgcon with the #TheInchstoneProject! It was great to share our work and there is so much more to come from our collaboration working to develop tools to measure outcomes for the most severely impacted individuals with DEEs @DEE_Pconnection
Thank you for being a discussant for our @gatlinburgcon symposium today @LeahEDSCN2A !!! You and @ConeckerGabi were phenomenal and put all of the research shared into such a meaningful context!!! @FamilieSCN2A #theinchstoneproject
Advocating for Ben, and children like Ben, 8 years ago and today at the #GatlinburgCon. #FartsAreFunny #SCN2A #CureSCN2A
Excited to share our #SCN2A Clinical Trial Readiness Study and the pilot #Inchstone project with @DEE_Pconnection
@natashanludwig @greatcait @CureSCN2A
Excited for my first Gatlinburg Conference!!! Happy to have conference buddies like @calliopeholing!!! @DEE_Pconnection #TheInchstoneProject @FamilieSCN2A @cureSYNGAP1 @combined_brain
On this International SCN2A Day, I am thankful to @FamilieSCN2A for all they do to support #TheInchstoneProject!!! Couldnβt do it without them!!!
Today is International SCN2A Awareness Day! SCN2A patients from over 51 countries are represented in our organization, and they all need a cure!
https://t.co/ZS6f4b8RN3
Sharing more about our comprehensive #SCN8A global Registry and our partner project at @DEE_Pconnection - #TheInchstoneProject - working to adapt outcome measures for the most severely impacted.
A wonderful synopsis. Thanks for the shout out and for highlighting the need for more sensitive and robust measures so we can track and count every "Inchstone" of progress. This is the exciting work of the multi disciplinary #TheInchstoneProject team! https://t.co/FerKwwZpS2
A reflection of mine on the Research Roundtable for Epilepsy meeting that occurred in May. https://t.co/RiOIVlKMDY
#TheInchstoneProject met with our Steering Committee, as well as with our Industry Advisory Panel. Incredible work is happening via this multi-stakeholder project to ensure that every person's progress can be measured and counted! https://t.co/VnoChgoROO
Yes! We are honored to host #TheInchstoneProject
working with the author, #AnneBerg & other leading COA researchers, PAGs and pharma to dig into this and find better ways of measuring smaller increments of progress by those with #DEEs. #CountEveryInchstone https://t.co/X5UNBSGSvc
This!!! πππ
Standardized assessment raw scores (not the composites) allow us to see the inch stones in our children. Uses the ABAS. I cannot emphasize this paper enough!!!
Measuring the inch stones for progress: Gross motor function in the de... https://t.co/9Nhh6q95Hi
Having the tools to accurately and appropriately measure #Inchstones progress in our severely impacted individuals is critical for successful patient-focused drug development. Proud to be a small part of the important #TheInchstoneProject. #DEE #CACNA1A
https://t.co/sGJPRrrWOs
Amazing mtg w/ @FamilieSCN2A who shared the abilities and challenges of their loved ones with #SCN2A to further research & help #TheInchstoneProject advance accurate/appropriate measures to capture the #inchstones of those severely affected by disease https://t.co/X5UNBSGkFE
@TracyDixonSalaz @TJBichell @GConecker @US_FDA @EpilepsyFdn Thanks for your allyship! @DEE_Pconnection's #TheInchstoneProject is a way for us all to collaborate to improve the ability to measure, as @US_FDA kept saying "what really matters to #patients" (& #caregivers). It's time to #CountEveryInchstone
https://t.co/iCecVlZr3a
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