Status:
RECRUITING
International CDKL5 Registry
Lead Sponsor:
University of Pennsylvania
Collaborating Sponsors:
Loulou Foundation
International Foundation for CDKL5 Research
Conditions:
CDKL5 Deficiency Disorder (CDD)
Eligibility:
All Genders
Brief Summary
Owing to the recent classification of CDKL5 Deficiency Disorder (CDD) as a unique disorder, there is a limited understanding of overall disease natural history and meaningful outcome measures. An inte...
Eligibility Criteria
Inclusion
- Person of any age, living or deceased;
- Be a patient or the legal guardian (parent or caregiver) of a patient with a diagnosis of CDD (Diagnoses must be confirmed by a clinician or genetic test);
- Have the ability to understand and complete an informed consent process where applicable per local regulations or have a legal guardian to provide consent on the patient's behalf if the patient is under the legal age, per local regulations, or otherwise unable to provide consent.
Exclusion
- Patient with a diagnosis of CDD who is under the legal age, per local regulations, enrolling without a legal guardian;
- Legal guardian of a patient who is 1) over the legal age, per local regulations, and 2) is able to read and provide consent and enter data. (We require that patients over the legal age who are capable of reading and understanding and informed consent provide data directly.)
Key Trial Info
Start Date :
December 5 2018
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
December 31 2028
Estimated Enrollment :
500 Patients enrolled
Trial Details
Trial ID
NCT04486768
Start Date
December 5 2018
End Date
December 31 2028
Last Update
October 10 2025
Active Locations (1)
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1
University of Pennsylvania Orphan Disease Center
Philadelphia, Pennsylvania, United States, 19104