What will the EGI Investigators do with the data?
Once the data are obtained from the sequencing laboratory, EGI investigators will evaluate the data using the most cutting edge DNA analysis techniques in the field. EGI investigators will then re-analyze the data on a regular and ongoing basis. Re-analysis is critical in order to make use of the most up-to-date new findings in epilepsy genetics as the EGI investigators seek to identify the genetic causes of epilepsy in each and every individual enrolled in EGI (if there is a genetic cause).
What type of research will the EGI Access Committee grant access for?
All applications that seek to advance research in epilepsy and related conditions will be encouraged.
Is there a possibility that additional clinical data or biological samples can be collected from patients if needed?
When obtaining consent, patients will be asked if they would like to be re-contacted, in the future, to provide additional de-identified information to researchers. Those patients that agree to this, may be re-contacted through appropriate channels. The process for contacting patients is done through the treating physician and will be determined by the EGI Steering Committee.
Will CURE offer funding opportunities to researchers around projects related to the EGI data?
Currently there are no funding opportunities available from CURE for projects associated with the EGI data. Should this change, announcements will be made on the CURE website and via CURE eBlasts to researchers. If you would like to sign up to receive CURE research eBlasts, please email us at EGI@CUREepilepsy.org
Once I have access to the data, do I have to report anything back to the EGI team?
Yes. For at least the first 3 years, the EGI Access Committee will track use of the data in EGI and any publications that result from the Initiative. This will enable EGI to measure its impact on the field of epilepsy, while also preventing duplication of efforts (except when scientific replication is warranted). EGI asks for short, bi-annual updates from researchers on the use of the data in an effort to track EGI’s success.