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Observational Study in Patients With Cyclin-dependent Kinase-like 5 Deficiency Disorder
Sponsor: Loulou Foundation
Summary
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.
Official title: Endpoint Enabling Study of Cyclin-dependent Kinase-like 5 (CDKL5) Deficiency Disorder (CDD)
Key Details
Gender
All
Age Range
Any - 55 Years
Study Type
OBSERVATIONAL
Enrollment
112
Start Date
2022-09-30
Completion Date
2027-01-20
Last Updated
2025-03-10
Healthy Volunteers
No
Interventions
No intervention; observational
No intervention; observational
Locations (23)
UCLA Mattel Children's Hospital
Los Angeles, California, United States
Children's Hospital Colorado
Aurora, Colorado, United States
Center for Rare Neurological Diseases
Norcross, Georgia, United States
Boston Children's Hospital
Boston, Massachusetts, United States
New York University
New York, New York, United States
Cincinnati Children's Hospital Medical Center
Cincinnati, Ohio, United States
The Cleveland Clinic
Cleveland, Ohio, United States
Childrens Hospital of Philadlephia Division of Neurology
Philadelphia, Pennsylvania, United States
Baylor College of Medicine
Houston, Texas, United States
Alberta Children's Hospital, Pediatric Epilepsy and Child Neurology
Calgary, Canada
The Hospital of Sick Children
Toronto, Canada
Hopital Necker- Enfants Malades
Paris, France
DRK Berlin - Epilepsiezentrum und Neuropädiatrie
Berlin, Germany
Schön Klinik Vogtareuth
Vogtareuth, Germany
Azienda Ospedaliero-Universitaria Meyer
Florence, Italy
Fondazione Policlinico Universitario A Gemelli, IRCCS
Roma, Italy
Ospedale Pediatrico Bambino Gesù
Rome, Italy
Azienda Ospedaliera Universitaria Integrata di Verona
Verona, Italy
Hospital Infantil Universitario Niño Jesús
Madrid, Spain
Ruber Internacional Hospital
Madrid, Spain
Hospital UniversitarioVithas Madrid
Madrid, Spain
Ruber Internacional Hospital
Madrid, Spain
Mediclinic
Dubai, United Arab Emirates