Research and Publications

Research is critical. Research about infantile spasms is gaining momentum.

The first-ever preventive epilepsy trial in the United States specific to infantile spasms in tuberous sclerosis complex is recruiting infants.
  • About 80 percent of children with TSC develop epilepsy within the first three years of life, and infantile spasms occur in up to 35 percent of children with TSC.
  • Some researchers believe that by identifying abnormal brain activity prior to the onset of seizures, we’ll be able to intervene earlier and prevent infantile spasms or other types of seizures.
  • The study will recruit 80 infants with TSC at 15 sites across the country and aims to determine the impact of preventive treatment with Vigabatrin on the developmental outcomes of children at two years of age. We welcome those interested to contact the Tuberous Sclerosis Alliance at tsalliance.org or 800-225-6872.
  • A clinical trial is recruiting newly diagnosed infants (aged 1-24 months) with infantile spasms to see if cannabidiol (CBD), used in combination with Vigabatrin for the treatment of IS, is better than Vigabatrin alone. To learn more, visit: www.childneurologyfoundation.org/providers-or-researchers/clinical-trials-directory

Other informational sources about Infantile Spasms

https://kidshealth.org/en/parents/infantile-spasms.html

https://www.ninds.nih.gov/Disorders/All-Disorders/Infantile-Spasms-Information-Page