The International Foundation for CDKL5 Research (IFCR) is pleased to announce the addition of two new CDKL5 Centers of Excellence in the United States – Monroe Carell Jr. Children’s Hospital at Vanderbilt located in Nashville, TN and The Children’s Hospital at Montefiore Medical Center located in Bronx, NY. The addition of these two sites brings the number of CDKL5 Centers of Excellence in the US to ten. 

CDKL5 deficiency disorder (CDD) is a rare genetic disorder. It is a developmental and epileptic encephalopathy that is estimated to affect 1 in 40,000 – 60,000 live births and is characterized by early-onset, intractable epilepsy and profound neurodevelopmental disability. 

The IFCR’s Centers of Excellence (COE) provide visiting families affected by CDD access to specialists they cannot find close to home, and COE clinicians provide guidance on CDD to physicians and health systems internationally. They lead the field in clinical research that contributes to a greater understanding of this rare disease. 

The initial eight COEs are part of a collaborative research infrastructure called the International CDKL5 Clinical Research Network (ICCRN). The ICCRN is focused on clinical trial readiness by developing and validating CDD-specific clinical outcome measures that are critical for CDD treatments of the future. (www.CDKL5ResearchNetwork.org). 

Monroe Carell Jr. Children’s Hospital at Vanderbilt 

Dr. Cary Fu leads a multidisciplinary care team that treats CDKL5 deficiency disorder and other Rett-related disorders as part of their Rett Syndrome Clinic. 

“It is a privilege to be part of the IFCR COE network. We are extremely excited about this new partnership as we continue to pursue the shared goal of improving the health and wellbeing of people and families affected by CDD through multidisciplinary clinical care, family support and patient-oriented research.” -Dr. Fu 

The Children’s Hospital at Montefiore Medical Center 

Dr. Aleksandra Djukic leads a multidisciplinary care team that has been providing medical care to patients at their Rett Syndrome Center since January 2008. 

“We look forward to joining the research efforts to help understand CDKL5 deficiency disorder better and advance medical care for our patients.” -Dr. Djukic 

Families can find information about scheduling an appointment at any of the CDKL5 Centers of Excellence on the IFCR’s website. 

The IFCR’s sponsorship makes the CDKL5 Centers of Excellence possible. We provide the coordination that brings the specialists together and funds the multi-Center research. For more information about the IFCR, please contact IFCR@cdkl5.com.