Help Us Find Better Treatments and Cures for LGS
What is a Learn from Every Patient Database?
Implemented in 2023, the LGS Learn from Every Patient Database collects medical records about those with LGS to document the impact of LGS on a person’s health over their lifetime. This information can be used to help understand what treatments work in LGS, how LGS Associated Disorders, such as sleep, communication, feeding, and behavioral issues, are managed, and how LGS evolves with aging.
The LGS Learn from Every Patient Database consists of three phases; you can learn more about each phase below.
Why is an LGS Learn from Every Patient Database Important?
Collecting medical records from every patient and studying the information you provide can help us improve outcomes for individuals with LGS.
This Learn from Every Patient database will create a Natural History Study on LGS. A Natural History Study is a research study that follows individuals over time to see how a disease evolves and how it is treated. As our understanding of the causes and progression of LGS in patients grows, we will learn what works, what doesn’t, and how symptoms change over time. This can eventually lead to better care for patients as well as new discoveries to help us design better treatments and find cures.
Why should you share your data in the LGS Learn from Every Patient Database?
If we are going to understand how best to treat LGS and its associated disorders, we need to follow a large number of LGS patients over time to determine how they are diagnosed, how they are treated, which treatments work, which treatments don’t work, and what happens as they grow older. The success of this Natural History Study relies on families sharing their records so that researchers can study it and identify patterns. In addition to helping advance science, the LGS Foundation will regularly share de-identified, aggregated data from the research studies, and these can be used by you to understand the LGS journey better. Let’s change the future of LGS treatment together!
You can participate in one or all of these Phases.
You do not have to complete Phase 1 to be eligible for Phases 2 and 3.
Learn More About Each Phase
Your medical records tell a story, one that can help shape future treatments. It’s time for you to own your medical records, so we've partnered with Invitae's Ciitizen platform - a secure digital platform for storing all of your existing medical records, controlled by you, at no charge. You’ll get access to all your medical records in one place. If you choose to share de-identified and summarized medical history with researchers through your account, the information from your records will help us gain a better understanding of LGS and get us closer to disease-modifying treatments.Sign Up Now - This will take you to Invitae's Ciitizen Platform Watch the informational LGS Community Webinar
Why Sign Up?
- To help advance research, inform a better understanding of LGS, and improve clinical trial design.
- To gain easy access to existing health records in one secure digital account.
- To own your health records and control who sees it.
What You Need to Know:
- Signing up is free.
- This is currently for US patients only.
- It only takes about 15 minutes to sign up.
- Before you sit down to sign up, gather the following:
- Computer or mobile phone with camera
- Your Photo ID - Drivers License or Passport
- Your loved one's birth certificate
- Hospital where your loved one received the LGS diagnosis
- When asked for the primary diagnosis, please select Lennox-Gastaut Syndrome (LGS).
- Have questions or need support?
“Knowing is not enough; we must apply. Willing is not enough; we must do” — GOETHE