500
Participants
Start Date
December 5, 2018
Primary Completion Date
December 31, 2028
Study Completion Date
December 31, 2028
Survey Instrument
This registry contains several surveys that will be released for patient/caregiver completion at enrollment and at time points following enrollment. These surveys can be completed on any computer that is connected to the internet.
RECRUITING
University of Pennsylvania Orphan Disease Center, Philadelphia
Loulou Foundation
OTHER
International Foundation for CDKL5 Research
UNKNOWN
CDKL5 Alliance
UNKNOWN
University of Pennsylvania
OTHER