Dear AGO parent,
Your voice matters—and time is running out. The Natural History Study closes at the end of October, and we need your input to make sure research reflects every family’s experience.
So far, about half of known patients have joined. That’s a great start, but to understand Argonaute syndromes fully—and to shape care for the future—we need more parents to participate.
Why your story is important
Early results already show common struggles across our community. These insights are powerful—but they aren’t complete. With more families adding their voices, researchers can:
Better understand patterns over time.
Define deeper studies (like the ongoing epilepsy project).
Write care guidelines you can bring directly to your doctors.
How to participate
Set aside about 30 minutes.
Have birth, pediatrician, and specialist reports handy.
Complete the questionnaire (available in English, German, Italian, and Spanish). Email us or Dr. Ielesicheva
If you don't know an answer, or if it is too much in one go, you can also set the questionnaire aside and come back later.
Send it in with your genetic report—confidentially handled.
Please know that not all symptoms listed have been observed in children affected by Argonaute syndromes! They are there for a complete coverage of possible symptoms when the questionnaire was first set up.
Act now
Every questionnaire is a building block. Every parent’s story strengthens the foundation for better care and future treatments.
Please complete the study before October 31.
Together, we can make a difference.
Together, we move toward treatment.
What happens to the study afterwards?
Prof. Lessel and colleagues will write up a research article on the study results, and work towards care management guidelines.
Patient questionnaires will be collected via a different platform - stay tuned for more information. And deep dives to better understand areas of common symptoms will be announced.