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About LGS Treatments Kit
Your Guide to “What’s Next” in LGS Care
Treatment Trackers
Use each tracker digitally, or download its blank, single-page PDF for printing. On your phone, open the downloaded PDF and choose Print from the share menu or PDF viewer. Formatted for US Letter, landscape.
Current Medications and Supplements
Surgeries, Current Diets, Devices & Alternative Therapies
Daily Medication Administration Tracker
Past Medications and Supplements
Past Diets, Devices, and Alternative Therapies
Clinical Trials for Seizures in LGS
Clinical Trials
Research is our best hope for advancing treatments and eventually finding a cure for LGS and associated epilepsies. Research is not just the responsibility of scientists and doctors. It is important that patients participate to whatever extent they are able.
Patients can participate in research in several ways, including 1) sharing their information with scientists through patient registries so researchers can understand how LGS affects individuals; and 2) volunteering for clinical studies or trials to help doctors understand how treatments affect patients.
Clinical studies seek to answer questions such as:
- Does this investigational drug or treatment work?
- Does it work better than another treatment already available?
- Does it cause any side effects?
- Are there any other benefits that could improve patient quality of life?
Since 2011, thanks to community engagement and study participation, 7 new medications have received approval from the FDA for the treatment of LGS.
What is a Clinical Trial
Clinical trials are research studies performed in those with a medical condition like LGS. They scientifically evaluate a medical or surgical intervention. They are the primary way that researchers find out if a new treatment, like a new drug, diet, or medical device is safe and effective in reducing seizures in those with LGS.
Why are Clinical Trials Important
Without volunteers, clinical trials cannot exist and we would not be able to find new treatments for LGS and seizures. Families who participate in clinical trials are on the cutting edge of helping us to find better treatments and cures. The reason we have treatments for LGS today is due to the fact that LGS families participated in past trials. We are forever grateful for their contribution.
Should I Participate in a Clinical Trial
People participate in clinical trials for a variety of reasons. Healthy volunteers say they participate to help others and to contribute to moving science forward. Participants with an illness or disease also participate to help others, but also to possibly receive the newest treatment and to have the additional care and attention from the clinical trial staff.
Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for others in the future.
Current Clinical Trials in LGS
Current Clinical Trials for Seizures in LGS (Medication, Rescue Therapies, and Neuromodulation)
There are several ongoing clinical trials and research studies that your loved one may be eligible to participate in.
Explore clinical trials and LGS research updates inside the app
The in-app research feed checks ClinicalTrials.gov and PubMed daily. AI summaries are labeled and linked to their original source records; you can explore the original records.