New registry aims to unlock secrets of rare CDKL5 disorder
NCT ID NCT04486768
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study creates a registry for up to 500 people with CDKL5 Deficiency Disorder (CDD), a rare genetic condition that causes seizures and developmental delays. Patients and their caregivers will provide information about symptoms, treatments, and quality of life over several years. The goal is to better understand the disease and help families learn about new clinical trials.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
Locations
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University of Pennsylvania Orphan Disease Center
Philadelphia, Pennsylvania, 19104, United States