The Global Genomic Variants Registry is a worldwide initiative of registry groups that seek to share their expertise and resources to create a collaborative global registry of patients with identified genetic causes of their epilepsy. The goal is to improve the efficiency in identifying patients who are eligible for a research study and better serve patients with genetic epilepsies.

The Global Registry will not take over the independence of any individual Registry or clinician. Please read our charter for details.


Governance

For any research that would rely wholly or in significant part on the Global Genomic Variants Registry or resources, members and interested collaborators are required to discuss their ideas with and within the Global Registry Steering Committee by submitting a research application to the Steering Committee.

This cooperative approach is expected to strengthen research by discussing ideas with experts, attracting additional resources for proposed projects, accessing larger samples, analytical tools, and sharing complementary skills.

Any collaborator who wishes to utilize the Registry shall also sign the Registry charter to agree to the principles of collaboration, data use, and publication policies of the Registry.


How to join as a research scientist:

  • Complete the research application and send it to the Registry.
  • The Steering Committee will review your project proposal.
  • If approved, the Registry will work with you to craft a description of your project for eligible participants.
  • Your research description and contact information will be forwarded to participants with your gene(s) of interest.
  • Participants who wish to enroll will contact you directly.