International CDKL5 Clinical Research Network

Recruiting Observational Study
CDKL5 CDKL5 Deficiency Disorder CDD
No Study Drug Researchers observe your health over time — no experimental treatment is given.
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At a Glance
Age
1 Month – 100
Sex
Any
Study type
Observational
Participants needed
1,000 (estimated)
Sponsor
University of Colorado, Denver · Other
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About This Trial
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…
Trial Locations
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Eligibility Criteria
Inclusion Criteria: * All children diagnosed with CDD age 1-month to 100 years of age that are receiving care at one of the study institutions or are registered with the International CDKL5 Disorder Database will be considered for the study population. Exclusion Criteria: * Individuals who do not…
Contacts

Sharon R Pincus, MA

303-949-7116

sharon.pincus@cuanschutz.edu

CONTACT

Scott T Demarest, MD MSCS

iccrn@childrenscolorado.org

CONTACT