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Active, not recruiting No phase listed Observational

Observational Study in Patients With Cyclin-dependent Kinase-like 5 Deficiency Disorder

ClinicalTrials.gov ID: NCT05373719

Public ClinicalTrials.gov record NCT05373719. Field values are reproduced from the official study page; the official ClinicalTrials.gov record remains the source of truth for eligibility, enrollment, and contact information.

ClinicalTrials.gov public records Last synced Oct 23, 2026, 6:38 AM EDT

Data is sourced from official ClinicalTrials.gov public API records. Always review the official ClinicalTrials.gov record for the latest information.

Official title

Endpoint Enabling Study of Cyclin-dependent Kinase-like 5 (CDKL5) Deficiency Disorder (CDD)

Brief summary

Reproduced verbatim from the official ClinicalTrials.gov record. Not medical advice.

Observational, noninterventional, 3-year study to examine the presence of detectable differences in neurocognitive, developmental, motor, neurophysiologic, and quality of life measures over time in patients with cyclin-dependent kinase-like 5 deficiency disorder.

Study identification

NCT ID
NCT05373719
Recruitment status
Active, not recruiting
Study type
Observational
Phase
Not listed
Lead sponsor
Loulou Foundation
Other
Enrollment
112 participants

Conditions and interventions

Eligibility (public fields only)

Age range
Up to 55 Years
Sex
All
Healthy volunteers
Healthy volunteers not accepted

This page does not interpret eligibility. Detailed inclusion and exclusion criteria are on the official ClinicalTrials.gov record.

Study timeline

Start date
Sep 30, 2022 (Actual)
Primary completion
Jan 20, 2027 (Estimated)
Completion
Jan 20, 2027 (Estimated)
Last update posted
Mar 10, 2025

2022 – 2027

United States locations

U.S. sites
9
U.S. states
8
U.S. cities
9
Facility City State ZIP Site status
UCLA Mattel Children's Hospital Los Angeles California 90095 —
Children's Hospital Colorado Aurora Colorado 80045 —
Center for Rare Neurological Diseases Norcross Georgia 30093 —
Boston Children's Hospital Boston Massachusetts 02115 —
New York University New York New York 10016 —
Cincinnati Children's Hospital Medical Center Cincinnati Ohio 45229 —
The Cleveland Clinic Cleveland Ohio 44195 —
Childrens Hospital of Philadlephia Division of Neurology Philadelphia Pennsylvania 19104 —
Baylor College of Medicine Houston Texas 77030 —

Site contact phone numbers, emails, and investigator names are intentionally not displayed here. Open the official ClinicalTrials.gov record for site contact information.

Non-U.S. locations

This page focuses on the U.S. directory. The official record also lists 14 non-U.S. sites.

About this trial record page

What this page shows
Public field values for ClinicalTrials.gov record NCT05373719, including study identification, conditions, interventions, eligibility (age, sex, healthy volunteer), timeline, and U.S. site list.
What this page does not do
No medical advice, eligibility judgments, treatment recommendations, study quality scoring, or AI-generated medical summaries. No site contact phone numbers, emails, or investigator names.
Where the data comes from
Sourced from the official ClinicalTrials.gov public API. The official record is the source of truth.
Last refresh
Last update posted Mar 10, 2025 · Synced Oct 23, 2026

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Open the official record

The complete public registry record, listed eligibility criteria, and available contact information for NCT05373719 live on ClinicalTrials.gov.

View official ClinicalTrials.gov record →