Friends! We did something great! Your experiences are now part of the published research on AHC.
When you particpated in our patient surveys, you took the time to tell us what AHC looks like at home, which symptoms you see, and which ones you most want a treatment to change. We analyzed your responses, and our paper on symptom burden and patient priorities in AHC is now published, today, in the Annals of the Child Neurology Society.
Here it is: https://doi.org/10.1002/cns3.70095
So much of AHC happens between clinic visits. You see when an episode starts, how long it lasts, and what it interrupts. What you see and experience at home is a critical piece of the puzzle, and it’s often missing from research.
Your responses are now published evidence. As AHC trials take shape, we’ll use that evidence to push for trials that measure the symptoms you live with and look for the changes you’ve told us would make the biggest difference.
Thank you for making time to share your experiences amid everything that goes into caring for someone with AHC. You made this research possible.
Next month, we’re launching a new natural history study that will build on this work by collecting experiences from people with AHC and their families over time. You’ve already changed what researchers know about AHC. Now we’re going to build on what you started. Stay tuned!
Most importantly, THANK YOU!
Companion Editorial by Dr Phillip Pearl https://onlinelibrary.wiley.com/doi/10.1002/cns3.70099