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

  • University of Pennsylvania Orphan Disease Center

    Philadelphia, Pennsylvania, 19104, United States