Texas Children’s named Clinical Research Center of Excellence for CDKL5 disorders

Texas Children’s Hospital has been recognized as a Clinical Research Center of Excellence (COE) for CDKL5 Deficiency Disorder and is one of only five pediatric institutions in the country to receive this honor.
The International Foundation for CDKL5 Research selected Texas Children’s and its academic partner Baylor College of Medicine as a Center of Excellence for its medical expertise and extensive clinical research experience in the field of Rett syndrome and Rett-related disorders including CDKL5 Deficiency Disorder.
“It’s an honor for our hospital to be chosen as a center of excellence for CDKL5 deficiency disorder research,” said Dr. Bernhard Suter, who is the director of the CDKL5 Center of Excellence at Texas Children’s.  “We look forward to collaborating with other centers across the country to accelerate CDKL5 research in order to provide the best care possible for these patients.”
Once considered an atypical form of Rett syndrome due to its overlapping symptoms and similar medical needs among patients with either condition, the symptoms associated with CDKL5 deficiency disorder and its genetic cause are distinct from those of Rett syndrome. CDKL5 deficiency disorder is now considered a separate condition.

The CDKL5 gene provides instructions for making a protein that is essential for normal brain development and function. When the CDKL5 gene is mutated, patients with CDKL5 deficiency experience a variety of symptoms including difficult-to-control seizures, repetitive hand movements and severe neuro-developmental impairment. Seizures usually begin within the first three months of life, and can appear as early as the first week after birth.
As a Center of Excellence, Texas Children’s multidisciplinary CDKL5 clinic (housed in our Rett Syndrome Clinic) provides comprehensive care to patients by allowing them to see several specialists in the same clinic visit – including neurology, genetics, GI, pulmonology, physical medicine and rehabilitation – resulting in more personalized treatment plans for newly diagnosed patients.
“After an extensive search of top notch medical facilities, we found that Texas Children’s Hospital was the perfect pairing of medical expertise and research initiatives into this condition that so tragically affects those suffering with CDKL5,” said IFCR President Karen Utley, who also is a parent of a child with CDKL5. “We are proud to partner with Texas Children’s Hospital in order to improve the quality of life and to find a cure for our children.”