Comparing Two Treatments: Medication v. Surgery for Lennox Gastaut Syndrome
A research study funded by the Patient-Centered Outcomes Research Institute (PCORI) is looking at how different treatments affect children and teens with Lennox-Gastaut Syndrome (LGS). The study will focus on how these treatments impact areas like communication, behavior, and overall quality of life. The research team is asking caregivers to share their experiences and thoughts on caring for someone with LGS.
The information collected will be published, but personal details will remain private. Participation is completely voluntary.
Who: Caregivers of children and young adults (up to age 26) with Lennox-Gastaut Syndrome
What’s involved: Participants will complete a series of surveys that ask about behavior, communication, and quality of life. There may also be follow-up questions about the child’s history with LGS, recent seizures, and medications. Surveys can be filled out whenever and wherever is convenient. As a thank you, families will receive a gift card for participating.
Study Title: Comparing Surgery and Medication Treatments for Lennox-Gastaut Syndrome
Lead Researcher: Dr. Sandi Lam
Study ID: Lurie Children’s IRB #2022-5454
Higher cognitive function in adults who had hemispheric surgery in childhood
This in-person study in Pasadena, California, at the Human Brain and Cognition Lab at Travis Research Institute and the Emotion and Social Cognition Lab at the California Institute of Technology examines how childhood hemispherectomy impacts cognitive and social functioning in adulthood.
Participants take a variety of tests and puzzles, and complete questionnaires about personal preferences and activities. This testing will be conducted in 3-4 hour sessions across several days, the exact amount of testing time varies from person to person. If eligible, participants will also be asked to do a series of MRI studies taking 1-1.5 hours. Participants with shunts to treat hydrocephalus will be excluded from the MRI-portion of the study.
Status: This study is ongoing. Interested participants should contact Kaitlyn Bennet at kaitlynnogales@fuller.edu. Travel and lodging for the study is paid for by the Pediatric Epilepsy Surgery Alliance.
Cognition in children with epilepsy
Children with epilepsy often have difficulties with cognition and development, which can range from mild to very severe. Assessing development can be difficult and time-consuming and we want to know if a simple set of tasks done online may be helpful in assessing cognition.
This study aims to assess the feasibility of using an online platform, Cognitron, to assess cognitive function in children with epilepsy. Participants in this study must be aged 5-20 and be diagnosed with epilepsy. Cognition will be measured using a series of tests, similar to those used in the Great British Intelligence Test, but have been adapted to children of different ages.
Driving with homonymous hemianopia after hemispheric surgery
Researchers at the Bowers Laboratory at Schepens Eye Research Institute at Harvard University are interested in understanding how teens and young adults drive with homonymous hemianopia.
- Willing to discuss current or prior driving experience;
- Able to understand and follow instructions for vision tests and driving in the simulator (do not have to be able to verbalize, but do need to be able to communicate if they are feeling discomfort or have questions etc);
- Able to operate the controls of the driving simulator (steering wheel, gas and brake pedals, horn button);
- Able to get into the driving simulator seat (involves a step up);
- Sufficient stamina for a study visit of 3 hours with breaks;
- Note: people who have a history of motion sickness when in a real car might have some problems with motion discomfort in the driving simulator so might not be good candidates
This pilot study is in Boston July 31 – August 3, 2024, in tandem with our Pediatric Epilepsy Surgery Conference and Family Reunion.
Reading after hemispherectomy
Researchers at the Brain, Education, and Mind Lab at MGH Institutes in Boston want to understand the brain’s reading circuits after hemispheric surgery. This study is in Boston August 1 – 4, 2024, in tandem with our Pediatric Epilepsy Surgery Conference and Family Reunion.
