About Our Program:
The Tuberous Sclerosis Clinic at Kennedy Krieger Institute is nationally recognized by the Tuberous Sclerosis Alliance as a specialized clinic dedicated to the comprehensive care of children, adolescents and young adults with tuberous sclerosis complex (TSC). Our clinic is an interdisciplinary team who specialize in evaluating and caring for individuals with epilepsy and neurologic and neurodevelopmental differences. We’re dedicated to caring for the whole individual and supporting families along their TSC journey.
Who We Serve:
TSC is a rare genetic condition that forms noncancerous tumors form in multiple systems throughout the body, including the brain, heart, lungs, kidneys and other organs. It occurs in approximately 1 in 10,000 births and affects 1 to 2 million individuals worldwide. Individuals with TSC experience variations in organ involvement, cognitive delays, seizures, and mood and behavior difficulties throughout the lifespan. We provide patients with expert care to individually address these concerns.
Our Approach and Team:
Our treatment approach emphasizes individualized, comprehensive and, coordinated care through an interdisciplinary model.
During initial evaluations, patients receive detailed medical, developmental and educational screenings by our pediatric neurologists and neuropsychologist, as well as a genetic evaluation with a genetic counselor. Subsequent appointments include medical evaluations with our pediatric neurologists and neuropsychologist, as well as a pediatric epileptologist and nephrologist when needed.
Additional testing and subspecialty evaluations may be required to determine the extent to which an individual is affected by TSC. These tests include:
- MRI of the brain and/or abdomen
- Opthalmologic screening with dilated eye exam
- Cardiac screening with ECHO and EKG
- Electroencephalogram (EEG)
- Ultraviolet light skin examination
- Laboratory tests
Our interdisciplinary team incorporates experts from Kennedy Krieger and Johns Hopkins Medicine, with specialists from multiple disciplines, including:
- Behavioral psychology
- Pediatric epileptology for refractory epilepsy
- Pediatric cardiology
- Pediatric ophthalmology
- Pediatric nephrology
- Pediatric rehabilitation medicine (including physical and occupational therapists and orthopedics)
- Neuropsychiatry
- Neurosurgery
- Sleep medicine
- Speech-language pathologists and assistive language technologists
Our team works closely with families and specialists to monitor progress over time and adjust care as the individual grows and their needs evolve. This approach allows us to identify concerns early, coordinate efficiently and create a tailored plan that supports each patient and their family in everyday life.
Research and Collaborations:
Our clinical care is driven by ongoing research to ensure that patients and families receive the most innovative therapies. We’re committed to improving the lives if patients and families by designing and participating in clinical and preclinical research.
Current projects include:
- Understanding gender and radiographic differences in TSC-associated neuropsychiatric disorders (TAND)
- Examining the neurocognitive and neuropsychiatric profile of TSC individuals across the lifespan
- Investigating surgical and non-surgical therapies for refractory epilepsy in TSC
An additional strength of our clinic is our commitment to seamless pediatric-to-adult transition planning. We collaborate with the Tuberous Sclerosis Complex Center at the Maryland at the University of Maryland to optimize continuity as patients transition from pediatric to adult healthcare. We designed TSC-specific questionnaires and tool-kits help guide families through this process with transition between 18-21 years of age. This partnership supports smooth transitions, reduces gaps in care and helps ensure young adults receive expert TSC management into adulthood.
Our clinic is proud to offer compassionate, coordinated, research-informed care that's designed to supports the whole individual and family.
Related Materials and Information:
Education Resources
Community Resources
- United Way 211 for local resource assistance
- Developmental Disabilities Administration of Maryland
- The Resource Finder
- University of Maryland Tuberous Sclerosis Complex Center