Data scientist/Drug Repurposing, Neurodegen + Epilepsy + ID + Oncology//art lover//patient advocate//mom of 4 / Views strictly my own.
NY-DC-Baltimore-Philly
Joined January 2022
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For those of you working on survey development for longitudinal studies, I think this is a helpful framework used by the All of Us study: ncbi.nlm.nih.gov/pmc/article…
If, for some reason, you need to communicate with, I don't know, a certain regulatory body, about what's wrong with the ALSFRS-R, here's a little open-access paper that you can drop in your comment: tandfonline.com/doi/full/10.…
This is a great example for other disease groups. It's a lot of work to maintain something like this so kudos to their volunteers!
Looking for ALS-related events coming up? Have an event that you want the ALS community to know about? Check out the I AM ALS Community Calendar! MAJOR shoutout to volunteers Olin and Rob for their hard work keeping this amazing resource up to date. iamals.org/action/als-calend…
Danielle Boyce retweeted
My Italian isn't great, but even I could understand the title on this poster!
✅🇮🇹 🌎#conSLAncio, in collaboration w/ @admedicum, @AipiOdv & EuropaUomoItaliaOnlus are thrilled to invite you to the First Italian Event of Networking Patients and Industries in Milan on 26 Sept.
Free sign-up: tinyurl.com/4jahkf24
#patientengagement #ALSMNDWithoutBorders
I want to share this gorgeous resource put together by colleagues and former students at JHU. We should all share our work so openly! national-covid-cohort-collab…
For two months in a row, Accredo has managed to schedule and ship Charlie's Epidiolex and only required me to reply to a couple of text messages along the way. I cannot begin to tell you how much it lifts my soul to not have to dread dealing with phone calls during my work day.
And compared to ten years ago when we would literally be on the phone with them for HOURS each month (for a different medication)? Talk about getting the MOST IMPROVED award!
This event went really well. I will post the day and time of our next one. Great turnout and insightful questions. You can just come and listen to the discussion.
If you represent a rare disease patient organization or are a patient/caregiver and have questions about patient registries, @DataSciDanielle and I are happy to answer any questions. Register at: rb.gy/x20bo
#patientregistries #dataanalytics #data
The ChatGPT Code Interpreter is incredibly cool, not because of what it can do now, but because of the promise that it holds. I embrace these new technologies and have no fear that they will replace me as a data scientist. 1/
I observed that it is limited by what's currently in its Python now; it can't access the internet to download new dictionaries. So when I gave it an SPSS file, it knew what library to use, but couldn't access it. It did provide me with the code to do it myself.4/