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CDKL5 Centers Of Excellence


Children’s Hospital Colorado

Boston Children’s Hospital
Cleveland Clinic

CDKL5 Centers for Excellence are the only multidisciplinary clinics for the treatment of people, a majority of whom are children, with a CDKL5 Disorder (CDKL5), which is a devastating genetic condition resulting in early-onset, difficult-to-control seizures, and severe neuro-developmental impairment.

 

Children’s Hospital Colorado


We are proud to partner with the Rocky Mountain Rett Association (RMRA) to create the first CDKL5 center within their existing Rett Clinic at Children’s Hospital Colorado, near Denver. This clinic is headed by Dr. Tim Benke, a world renowned neurologist and neuroscientist. Together with an amazing team of 15 specialists, the Rett and CDKL5 clinic is a unique model of comprehensive care for patients. 

Childrens Hospital Colorado

The Rett Clinic and CDKL5 Center of Excellence is a multidisciplinary clinic that offers care by the following specialties

  • Neurology/Epileptology
  • Physical Medicine and Rehabilitation
  • Developmental pediatrics
  • Pulmonary
  • Cardiology
  • Orthopedic surgery
  • Geneticsv
  • Gastroenterology (GI)
  • Behavioral psychology
  • Nutrition
  • Physical therapy
  • Speech therapy
  • Occupational therapy
  • Nursing
  • Social work

The clinic meets quarterly, and patients are evaluated by all or most of the listed specialists according to need, in a single afternoon.

To schedule an appointment, please contact Tristen Dinkel at: rettclinic@childrenscolorado.org

Children’s Hospital Colorado is ranked by US News and World Reports as one of the country’s best children’s hospital in Neurology and Neurosurgery, Cardiology, Pulmonary, Gastroenterology and Orthopedics, to name a few. Take a virtual tour of their hospital. IFCR is excited and privileged to partner with them on this critical step in CDKL5 research and care for our children and adults living with this devastating disorder.


 

Boston Children’s Hospital

The International Foundation for CDKL5 Research (IFCR) is proud to announce the opening of our second CDKL5 Center for Excellence at the prestigious Boston Children’s Hospital in Boston, Massachusetts.

“After an extensive search of top notch medical facilities on the East Coast for our second CDKL5 Center for Excellence location, we found that Boston 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 Dr. Katheryn Elibri Frame, IFCR President and mother of an affected child. “IFCR's vision in establishing these centers is to foster physician expertise in CDKL5, and thereby establish diagnostic, therapeutic and preventative standards of care. We are proud to partner with Boston Children’s Hospital in order to improve the quality of life and to find a cure for our children.”

The new CDKL5 Center for Excellence is led by Dr. Walter Kaufmann, esteemed Director of the Rett Syndrome Program at Boston Children’s Hospital , and Dr. Heather Olson, with the hospital’s Epilepsy Genetics program. Dr. Kaufmann leads a team of specialists with expertise in Rett Syndrome (RTT), which is a degenerative disorder that is similar to CDKL5 Disorders in its presentation and symptoms but is more common than CDKL5. RTT affects 1 in 10,000 female births, while CDKL5 affects both males and females, however the true incidence of CDKL5 is not known at this time. There are as many as 600 people worldwide to date, although the number is growing rapidly as genetic testing for this condition becomes more comprehensive and affordable.

The CDKL5 Center For Excellence at Boston Children’s Hospital holds monthly clinics. The comprehensive, multidisciplinary clinic provides each patient with many different specialists over the course of one to two days. These specialties include neurology, epileptology, gastroenterology/nutrition, neuro-ophthalmology, genetics, sleep specialists, and more. Making it a truly unique experience, each of these specialists is committed to being a CDKL5 expert, relative to his or her respective specialty.

The clinic’s patients are given personalized recommendations for treatment, tests, and therapies, and are then followed by a nurse coordinator throughout the year. The patient comes away from the clinic with a comprehensive treatment plan that can be instrumental in guiding his or her local educational, therapeutic and medical teams.

To learn more about the CDKL5 Center of Excellence at Boston Children’s Hospital, please visit http://www.childrenshospital.org/clinicalservices/Site1886/mainpageS1886P5.html.

To schedule an appoint or for more information, please contact the clinic coordinator, Laurel Calderwood at 617-919-2536 or laurel.calderwood@childrens.harvard.edu.

 

Cleveland Clinic

 

International Foundation for CDKL5 Research (IFCR) is proud to announce the opening of the third CDKL5 Center of Excellence in Cleveland, Ohio at the Cleveland Clinic.

Dr. Parikh, who serves as Director of the Cleveland Clinic Neurogenetics, Metabolic & Mitochondrial disease program, has a long-standing clinical interest in CDKL5 Disorder. His expertise and research initiative into CDKL5 Disorder made the Cleveland Clinic a perfect fit when the IFCR sought a third location.
“We are very excited to announce this collaboration between the IFCR and the Cleveland Clinic Foundation. After careful consideration of nationally recognized institutions for our third CDKL5 Center of Excellence, we found that Dr. Parikh and his team are the perfect partners. Dr. Parikh's team bring leading medical expertise, research capabilities and initiatives, and a collaborative culture to the care of those suffering with CDKL5 Disorder” said Dr. Katheryn Elibri Frame, IFCR President and mother of an affected child.
The CDKL5 Center of Excellence at the Cleveland Clinic will begin holding quarterly clinics starting this August, and will expand to more frequent sessions as needed. The comprehensive, multidisciplinary "clinic without walls" provides each patient with as many as 12 different specialists over the course of one to two days. Those specialists include a neurologist, cardiologist, orthopedist, nutritionist, gastroenterologist, ophthalmologist, genetic counselor, developmental pediatrician, social work, as well as rehabilitation therapists. Each of these specialists is committed to being a CDKL5 expert, relative to his or her respective specialty.

The clinic’s patients are given personalized recommendations for treatment, tests, and therapies, and are then followed by a research coordinator throughout the year. The patient receives a comprehensive document from the Center for Excellence that can be instrumental in guiding his or her local medical, therapeutic and educational teams.

“We aim to continue IFCR’s goal of providing comprehensive multidisciplinary care for patients with CDKL5 Disorder,” said Dr. Parikh. “We will continue IFCR's vision for these centers, which is to foster physician expertise in CDKL5, and thereby work to establish diagnostic, therapeutic and preventative standards of care.”

To schedule your appointment for the CDKL5 Clinic, please call 216-444-1994 (do not press #1; stay on the line to be connected ditectly to the physicians office) or contact Lisa Sanders at sanderl@ccf.org or Dr. Parikh at parikhs@ccf.org.

For more information on the CDKL5 Center of Excellence at The Cleveland Clinic, please visit: http://my.clevelandclinic.org/neurological_institute/pediatric-neurology/default.aspx.
© 2014