Acetazolamide vs Other New Anti-Seizure Medication Study for CHD2

CCC wants to better understand the promising effects of acetazolamide (ACZ - brand name Diamox in US) on CHD2 patients identified in the small study by Dr. Gia Melikishvili in 2024.  

Key participants:

• Those starting acetazolamide in the last 12 months.
• Those starting ANY new anti-seizure medication in the last 12 months.

• To understand how effective ACZ is on CHD2-related seizure control by comparing it to other anti-seizure medications (ASMs).
• The study is being led by Dr. Rhys Thomas and his team from Newcastle UK.
• The goal is to see if ACZ should be a clear first-defense drug for CHD2-related seizures (so no more guessing games)

• Complete the 15 minute survey. Initial results will be presented at CCC’s conference this June in Colorado.
• There will be another follow-up survey for participants in the future.

Thank you for being part of this important study!