In a recent blog post, we talked about the importance of having conversations about SUDEP, and shared some resources to help facilitate this conversation.

In 2018, CNF worked with Digital Health Solutions LLC and Greenwich Biosciences Inc. to create a SUDEP module for the Child Health Improvement through Computer Automation (CHICA) system. CHICA is a system that helps clinicians provide education to patients and caregivers based on feedback provided prior to the office visit. It collects information from a survey taken by the patient or caregiver and then creates a prioritized list of topics for the clinician to review.

We did a pilot project with this module, testing it out in six different clinics to see if we could increase the prevalence with which physicians were having conversations with patients about SUDEP. And we did! In our pilot study, we saw an increase in the rate of conversations about SUDEP jump from 22% to 50% in five weeks. This is an unprecedented change in this community.

Over the years to come, CNF is hoping to make similar advances in other areas of child neurology. We’re excited to announce that we’ve raised funding for the first year of this project, where we’ll be reviewing clinical guidelines and gathering data to help us build a CHICA module for a wide variety of child neurology related clinical topics.

We’d like to thank our Founding Visionary Partners for this first phase of our CHICA project – Greenwich Biosciences (Lead Visionary Partner), PTC Therapeutics, and Avexis. This is just the beginning, and we’re so excited for the journey ahead. If you’d like to learn more about CNF’s CHICA Initiative, please reach out by email to [email protected]