New Observational Study on Seizure or Seizure-like Movements Now Recruiting

Researchers at NYU are recruiting from across multiple rare genetic epilepsies, including STXBP1, with the aim to help improve care and clinical trial outcomes. Parents and caregivers of children with STXBP1 are invited to submit up to four cellphone videos and up to four video-EEGs of their child experiencing a seizure or seizure-mimicking event. Additionally, they will be asked to complete a short survey for each video. Participation is done virtually and limited to those who are English speaking at this time. 

These videos will be used to produce educational materials, and provide valuable information for educating parents, caregivers, and healthcare providers on how to identify different events. Understanding these differences will help in making better treatment choices and in obtaining more valid study results.

This research is a continuation of the collaboration across the 6 different patient advocacy groups that we wrote about in our September blog post here.

If you’re interested in learning more, please contact their Research Coordinator, Kim Nguyen, by email at Kim.Nguyen2@nyulangone.org or phone at 646-558-0842 to set up a time to speak. Kim will be happy to coordinate a schedule that works for you.