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Multi-Site Validation of Biomarkers and Core Clinical Outcome Measures for Clinical Trial Readiness in CDKL5 Deficiency Disorder
*This project is supported by the NIH-NINDS (U01NS114312-01A1).
The International CDKL5 Disorder Database (ICDD) was established in 2012 by researchers at Telethon Kids Institute in Perth, Australia. In 2019, these Australia-based researchers teamed up with the United States CDKL5 Centers of Excellence. Together, we are facilitating CDKL5 Deficiency Disorder (CDD) clinical research endeavors across the globe, and we call this partnership the International CDKL5 Clinical Research Network (ICCRN).
Our collaborative research network has been made possible by the generous support of the National Institute of Neurological Disorders and Stroke (NINDS) and the International Foundation for CDKL5 Research (IFCR).
Evaluating Anatomic Connectivity in the Brain of Patients with CDKL5 Deficiency Disorder
Using diffusion tensor imaging (DTI), data that is often collected but not processed during routine clinical MRI scans of the brain to evaluate functional and anatomic connectivity for a parallel study in CDD patients and mice.
If you would like to share your child’s MRI(s) for this study, we will ask you to enroll in Boston Children’s Hospital CDKL5 Clinic Study so that they are able to collect identifiable information including MRI CDs and other clinical records that allow them to identify your child’s CDKL5 genotype and phenotype. If you are interested, you can contact their CDKL5 research team at cdkl5@childrens.harvard.edu or 617-355-5230.