Make a positive impact by volunteering to participate in research that improves the lives of our community.
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.
Study Title: Comparing Surgery and Medication Treatments for Lennox-Gastaut Syndrome
Lead Researcher: Dr. Sandi Lam
Study ID: Lurie Children’s IRB #2022-5454
Accessing Epilepsy Surgery: Black and Hispanic Children
Studies show that Black and Hispanic children are less likely to undergo surgical evaluation and treatment for drug-resistant epilepsy than their White, non-Hispanic peers.
Newly launched research is taking a crucial step forward. Through in-depth, bilingual interviews, the study explores the real-life experiences, perceived barriers, and potential solutions to improve access to epilepsy surgery. You will receive $50 for your interview. U.S. families only.
Los estudios demuestran que los niños negros e hispanos tienen una probabilidad significativamente menor de someterse a una evaluación y tratamiento quirúrgico para la epilepsia farmacorresistente que sus compañeros blancos no hispanos.
Esta investigación, recientemente lanzada, da un paso crucial al escuchar directamente las voces de las familias negras e hispanas. Mediante entrevistas bilingües exhaustivas, el estudio explora las experiencias de la vida real, las barreras percibidas y las posibles soluciones para mejorar el acceso a la cirugía de la epilepsia.
¡Póngase en contacto con el equipo de investigación para saber cómo puede participar! Para families in los Estados Unidos solamente.
Contact the research team directly:
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.
