Pediatric Epilepsy Research Consortium (PERC)

The Pediatric Epilepsy Research Consortium (PERC) is a national collaboration of more than 40 pediatric epilepsy programs in the US. The aim of this consortium is to provide a network and infrastructure to facilitate research breakthroughs that will improve clinical care for epilepsy patients.

Many severe childhood epilepsies are relatively rare. So, large multi-center collaborative efforts are crucial to identify new treatments and improve patient outcomes. Texas Children’s epileptologist, Dr. Dave Clarke is an active member of PERC. Since its inception in 2010, studies conducted by PERC have provided important insights into catastrophic childhood epileptic syndromes. Here are some highlights -

• A 2015 PERC study found that in a cohort of two hundred thirty infants with West Syndrome, the response rate varied by the treatment that was chosen. ACTH appeared to be more effective than other standard therapies.
   
• In a follow-up study, they reported that greater than one third of children with infantile spasms respond to a second medication. Choosing a standard medication (ACTH, oral corticosteroids, or vigabatrin) that has a different mechanism of action appeared to be more effective. Rapid initial treatment increased the likelihood of response to the second treatment.
   
• Recently, they reported that first-line treatment with standard therapy was by far the most important variable in determining the likelihood of response to treatment of infantile spasms with or without hypsarryhthmia.
   
• Based on the data from many tertiary pediatric epilepsy centers in the US, a PERC study reported that genetic testing, particularly a combination of aCGH and epilepsy gene panel tests, provided a definitive diagnosis in >40% of children who presented with new‐onset infantile spasms without an obvious cause after initial clinical evaluation and MRI.