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What is the LGS EGI Exome Project (LEEP)?

LGSF, in partnership with EGI, is piloting a project called LEEP; the LGS / EGI Exome Project, to fund the exomes of a limited number of patients in EGI. The goal is to test the feasibility of funding exomes for patients that cannot get the test covered by their insurance company and to advance gene discovery in LGS. If successful, more families may be able to get exome testing through EGI and more LGS genes may be found. That is our hope!


What is EGI?

EGI is an initiative created by CURE and NINDS to advance precision medicine in epilepsy. EGI has created a centralized database to hold the exome and genome sequence data of people with epilepsy. The data is analyzed every six months and if a cause is found, it is reported back to the treating physician. PARTICIPANTS may also CHOOSE TO SHARE THIER EGI DATA to advance cutting-edge epilepsy research.

LGSF + EGI Partnership


Who qualifies for the LGS EGI Exome Project (LEEP)?

The LGSF has partnered with doctors around the U.S. to select patients for this pilot study. Patients who are enrolled meet the following criteria:

  • Age of onset of seizures under 8 years of age

  • Slow spike and wave on EEG

  • Multiple seizure types, seizure uncontrolled

  • Developmental regression

  • LGS is not due to trauma or infection

  • Have not had exome sequencing done before and can’t get the testing covered

  • Agree to a one-hour teleconference to learn about and consent to the study

  • Agree to donating blood to EGI and following the protocol to do so

  • Sequencing of trios (mom, dad and affected child) are preferred by not required


What is the process for enrolling in the LGS EGI Exome Project (LEEP)?

​LEEP is now full and we are not currently enrolling at this time. To be placed on the wait list, please fill out the form below. 



By filling out this form, you are requesting that the names of you and your child be added to a list of LGS patients/parents seeking exome sequencing as part of the Epilepsy Genetics Initiative.  After your information is submitted on this form, a representative from the LGS Foundation will contact you regarding the next steps, although LGSF cannot guarantee that all applicants will receive research exome testing.  This opportunity is only available on a first-come, first-serve basis.  The list of applicants will not be made public.  You may withdraw at any time. ​

LGSF is unable to provide medical advice.  If you have questions regarding your diagnosis, please consult your physician.  LGSF does not determine who is qualified to enroll in EGI; your physician and the EGI genetic counselor will notify you if you qualify.  This website is intended only to inform LGSF members of the EGI opportunity.  Individuals qualified to enroll under the LEEP program are enrolled on a first-come, first-serve basis.  LGSF respects your privacy and does not solicit or divulge information identifying enrollees of the LEEP program.  Further, LGSF is not involved in exome testing, does not endorse any sites or products, and expressly disclaims all liability to applicants and participants in this research study. 

To learn more about this study please contact  Christina@LGSFoundation.org

Thank you to the Presenting Sponsor of LEEP