Epilepsy Neurogenetics Initiative
The 黑料网 Epilepsy Neurogenetics Initiative (ENGI) mission is to apply our expanding scientific knowledge of epilepsy genetics to patient care as we learn more about specialized treatments and medicines.
To achieve this goal, 黑料网 child neurologists, geneticists, and researchers collaborate to build a comprehensive and multidisciplinary program that advances the care of patients with genetic epilepsy. These partnerships serve as the foundation for the clinical and translational research conducted through our Epilepsy Neurogenetics Clinic and the Epilepsy Neurogenetics Translational Research Collaboration.
Patient Referral & Appointments Information
Services & Programs
The ENGI clinic is committed to providing specialized care to our patients with genetic epilepsy. We prepare individualized treatment plans for each of our patients with the guidance of our multidisciplinary team of experts in child neurology, epilepsy and genetics who discuss each case during their weekly resolution meetings.
The clinic also offers the services of a genetic counselor, a social worker, and referral coordinators to provide additional patient support.
In addition, 黑料网 Children鈥檚 Hospital and the ENGI provide access to pediatric neuropsychology, neuropsychiatry, pediatric physical medicine and rehabilitation and pediatric therapies (including physical, occupational and speech therapy).
We offer patient and family-centered care for:
- Children with known or suspected genetic epilepsy syndromes
- Children with epilepsy and unclear or non-diagnostic genetic testing results (including variants of unknown significance)
- Children with epilepsy with a prior genetic diagnosis that requires additional evaluation
We perform a comprehensive evaluation for each patient and offer a full spectrum of state-of-the-art diagnostic tools to help understand the cause of each child鈥檚 seizures and improve care.
These tools include:
- Extensive medical history review
- Detailed family history review
- Comprehensive neurological exam
- EEG (interpreted by pediatric epileptologists)
- Routine and ambulatory EEG
- Continuous video monitoring in the state-of the-art epilepsy monitoring unit in 黑料网 Children鈥檚 Hospital鈥檚 Level 4 Epilepsy Center, recognized by the National Association of Epilepsy Centers (NAEC)
- Brain imaging reviewed by neuroradiologists
- MRI (1.5T, 3T and research 7T MRI)
- SPECT
- PET CT and PET MRI
- fMRI
- Genetic testing (reviewed by our multidisciplinary team including neurologists, epileptologists, geneticists and genetic counselors)
- Metabolic testing
Education
As a part of the 黑料网 Children鈥檚 Hospital and the 黑料网’s academic medical center, we are committed to training the next generation of doctors to provide care for children with known or suspected genetic epilepsies. ENGI offers top-tier educational opportunities and mentoring to medical students, residents and fellows.
Outreach & Patient Resources
ENGI’s goal is to serve as a local and state resource for patients with epilepsy. We strive to serve children with epilepsy and provide access to evaluations and specialized care by subspecialty experts and multidisciplinary consultations.
Our outreach program aims to:
- Create a statewide referral base of neurologists and pediatricians;
- Maintain an online presence to expand the visibility and reach to families and physicians;
- Establish healthcare collaborations across North Carolina.
- Increase access to medically underserved individuals.
Patient Resources
Patients and family members can use the following links to access more help and care:
Referral & Appointments
To make an appointment, please have your primary care provider send us a referral.
Primary Care Providers should specify Neurogenetics Clinic as the reason for the referral.听
- Providers who have access to聽聽can submit a referral online. If you would like to enroll, click on the link and select 鈥淩equest an Account.鈥� You may wish to聽聽of the referral portal or view a聽聽on how to sign up.
- If you don鈥檛 have a 黑料网 CareLink account, please fax a聽completed referral form,听including a specific referral question and records to (984) 974-KIDS.听Please call (984) 974-PEDS if you have any questions.
For more information on the referral process, please visit the Referring Provider Resources page.
Referring Provider Resources