Over the past five years, LGS research has experienced significant advancements, providing hope for individuals and families affected by this complex disorder.
At the LGS Foundation, we know that patient-driven research plays a vital role in driving research on topics that matter most to patient families.
Our research efforts focus on four key areas:
- Bringing the patient-family voice to LGS research. Nothing about us, without us!
- Understanding and treating the evolution and underlying cause of LGS
- Developing innovative treatments for seizures and LGS co-occurring conditions (e.g., communication, sleep, and behavior issues)
- Establishing a Learn From Every Patient Database
Bringing the Patient-Family Voice to LGS Research:
Patient-driven research, also known as patient-centered research, emphasizes the involvement of patients and their perspectives throughout the research process. At the LGS Foundation patient families contribute their unique insights, experiences, and expertise to shape research questions, study design, and outcomes. By empowering our families as partners, we ensure that LGS research aligns with family priorities, needs, and values. In all we do, the patient family voice is at the center of our work.
Understanding and Treating the Evolution and Underlying Cause of LGS:
Research plays a vital role in understanding how the abnormal brain waves of LGS evolve from seizures and change the way the brain functions. The LGS Foundation is leading the charge in this area, funding much-needed research that not only tries to correct the abnormal brain waves of LGS but also seeks to prevent the evolution from seizures to LGS.
Developing Innovative Treatments for Seizures and LGS Co-Occurring Conditions:
Seizures are the hallmark symptom of LGS, and many families suffer daily, uncontrolled seizures. Co-occurring medical conditions are always with LGS. These include intellectual and developmental disabilities, mood disorders, sleep disturbances, and motor impairments. Every day, we work to advance research that will bring about new pharmacological, neurostimulation (RNS, DBS, VNS), dietary, and behavioral therapies for the seizures and comorbidities seen in LGS.
Establishing an LGS Learn From Every Patient Database:
A Learn From Every Patient Database is a natural history study that will provide invaluable insights into the progression of LGS over time. By observing and documenting the natural course of LGS in many patients, researchers can understand the variability in symptoms and treatments, the rate of disease progression, and the impact on patients’ lives. This knowledge is crucial for developing appropriate interventions, identifying potential therapeutic targets, and mapping the course of LGS from childhood to old age.
LGS research is a dynamic field that holds promise for individuals with this devastating disorder. Through ongoing studies and in partnership with the LGS Foundation, researchers are unraveling the mysteries of LGS, searching for improved treatments, and ultimately striving for a better quality of life for those affected.
Updated 7/20/2023