New registry aims to unlock mysteries of rare seizure disorder
NCT ID NCT04486768
First seen Nov 01, 2025 · Last updated May 01, 2026 · Updated 33 times
Summary
This study creates a global registry for up to 500 people with CDKL5 Deficiency Disorder (CDD), a rare genetic condition causing severe seizures and developmental delays. Caregivers and doctors provide information about symptoms, treatments, and milestones over several years. No new treatments are tested; the goal is to better understand the disease and alert families about future clinical trials.
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Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
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Contacts and locations
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Locations
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University of Pennsylvania Orphan Disease Center
Philadelphia, Pennsylvania, 19104, United States
Conditions
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