Global effort launches to map rare genetic disorder affecting children
NCT ID NCT04486768
Summary
This study is creating a global registry to track up to 500 people with CDKL5 Deficiency Disorder (CDD), a rare genetic condition. The goal is to collect information from patients and their doctors over several years to better understand the disease's symptoms, progression, and how different treatments work. No medical procedures are involved; it's purely an information-gathering effort to help guide future research and connect families with clinical trials.
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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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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University of Pennsylvania Orphan Disease Center
RECRUITINGPhiladelphia, Pennsylvania, 19104, United States
Contact Email: •••••@•••••
Conditions
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