Actively Recruiting
International CDKL5 Clinical Research Network
Led by University of Colorado, Denver · Updated on 2023-12-06
1000
Participants Needed
9
Research Sites
313 weeks
Total Duration
On this page
Sponsors
U
University of Colorado, Denver
Lead Sponsor
N
National Institute of Neurological Disorders and Stroke (NINDS)
Collaborating Sponsor
AI-Summary
What this Trial Is About
Pathogenic variants in the Cyclin-dependent kinase like 5 (CDKL5) gene cause CDKL5 deficiency disorder (CDD, MIM 300672, 105830), a severe developmental and epileptic encephalopathy associated with cognitive and motor impairments and cortical visual impairment. While capability for disease modifying therapies is accelerating, there is a critical barrier for clinical trial readiness that may result in failure of these therapies, not due to lack of efficacy but due to lack of validated outcome measures and biomarkers. The measures and biomarkers validated here will be adaptable to other developmental and epileptic encephalopathies.
CONDITIONS
Official Title
International CDKL5 Clinical Research Network
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Children diagnosed with CDKL5 Deficiency Disorder (CDD) aged 1 month to 100 years
- Receiving care at a participating study institution or registered with the International CDKL5 Disorder Database
You will not qualify if you...
- Individuals who do not meet the inclusion criteria
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 9 locations
1
University of California Los Angeles/UCLA Mattel Children's Hospital
Los Angeles, California, United States, 90095
Actively Recruiting
2
University of Colorado Denver/Children's Hospital Colorado
Aurora, Colorado, United States, 80045
Actively Recruiting
3
Harvard Medical School/Boston Children's Hospital
Boston, Massachusetts, United States, 02115
Actively Recruiting
4
Washington University in St. Louis/St. Louis Children's Hospital
St Louis, Missouri, United States, 63110
Actively Recruiting
5
NYU Langone Health
New York, New York, United States, 10016
Actively Recruiting
6
Cleveland Clinic Foundation
Cleveland, Ohio, United States, 44195
Actively Recruiting
7
Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, United States, 19104
Actively Recruiting
8
Baylor College of Medicine/ Texas Children's Hospital
Houston, Texas, United States, 77030
Actively Recruiting
9
Telethon Kids Institute/Perth Children's Hospital
Perth, Nedlands Western Australia, Australia, 6009
Actively Recruiting
Research Team
S
Sharon R Pincus, MA
CONTACT
S
Scott T Demarest, MD MSCS
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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