In December of 2008, the IDEA League established its Collaborative Clinical Research and Comprehensive Care Network (CCR-CCN). The purpose of the CCR-CCN is to bring together a network of referral centers committed to providing high-quality, multidisciplinary care to patients with Dravet syndrome and related disorders. Each participating epilepsy center endeavors to proactively address and treat the medical and non-medical needs of the patient in a coordinated and evidence-based manner. Centers will be collaborating to develop a standard of care for treating Dravet syndrome and to establish clinical research protocols. The IDEA League serves as a patient referral source and will sponsor educational activities for health care workers and families. In addition, the League helps coordinate communication and information sharing among centers and will be maintaining a Dravet syndrome patient registry.

 

CCR-CCN clinics are committed to providing physician-guided, patient-centered comprehensive care. They recognize that Dravet syndrome affects the whole child and that the most important members of the team are the patient and parents. CCR-CCN clinics will be building teams of caregivers, including a qualified epileptologist, nurse practitioner, social worker and parent liaison. Clinics will include an epilepsy monitoring unit with appropriately trained staff and a ketogenic diet program with a dedicated keto-dietician.

 

The CCR-CCN is a developing project, and specific services provided at participating centers will vary and grow over time. The centers currently enrolled in the CCR-CCN are listed below. Please feel free to call any of these centers to schedule an appointment.

 

Childrens Hospital of Philidelphia (CHOP)

Philadelphia, PA

Liaison: Eric Marsh, MD

Scheduling: 215-590-1719

 

 

 

Children's Memorial Hospital

Chicago, IL

Liaison: Linda Laux, MD

Scheduling: 773-880-4000

 

 

Children's National Medical Center

Washington, DC

Liaison: Phillip Pearl, MD

 

Dartmouth-Hitchcock Medical Center

Lebanon, NH

Liaison: Richard Morse, MD

603...

 

 

Duke University Medical Center

Durham, NC

Liaison: Mohamad Mikati, MD

Scheduling: 919-668-0477

 

 

Gillette's Children's Healthcare

St. Paul, MN

Liaison: Beverly Wical, MD

Scheduling: 800-719-4040

 

 

Mayo Clinic

Rochester, MN

Liaison: Katherine Nickels, MD

Scheduling: 507-284-1588

 

 

Miami Children’s Hospital

Miami, FL

Liaison: Ian Miller, MD

Scheduling:  305-662-8330

 

 

 

Seattle Children’s Hospital

Seattle, WA

Liaison: Russell Saneto, MD

206...

 

 

 

UCSF Medical Center

San Francisco, CA

Liaison: Joseph Sullivan, MD

Scheduling: 415-353-2437