- Director, Center for Pediatric Rasmussen Syndrome
Expertise: Epilepsy, Ketogenic Diet, Neurology
- Professor of Neurology
- Professor of Pathology
Expertise: Multiple Sclerosis, Neurology, Transverse Myelitis
- Section Chief, Pediatric Neuroradiology
- Pediatric Radiology and Pediatric Neuroradiology Fellowship Director
- Associate Professor of Radiology and Radiological Science
- Joint Appointment in Pediatrics
Expertise: Diagnostic Radiology, Pediatric Neuroradiology, Pediatric Radiology, Radiology
Our center offers the full spectrum of services for children with Rasmussen syndrome (Rasmussen encephalitis), including diagnosis and medical and surgical treatment. We treat children from birth to 21 years of age. Our team includes neurologists (including neuroimmunologists), neurosurgeons, and neuropathologists familiar with Rasmussen syndrome and conditions that mimic it. We partner closely with experts in rehabilitation and neuropsychology at the Kennedy Krieger Institute to provide the continuum of care.
About the Center
We aim to:
- Reduce the burden of illness in Rasmussen syndrome and immune-mediated epilepsies, through accurate diagnosis and timely treatment.
- Investigate the experiences and consequences of immune dysregulation in epilepsy to better understand how to treat the condition.
- Serve as an educational resource for children, their families, and healthcare professionals regarding Rasmussen syndrome.
About Rasmussen Syndrome
Rasmussen syndrome (also known as Rasmussen encephalitis), is a rare neurological disease that usually affects one hemisphere of the brain, often resulting in frequent seizures. It is considered a form of epilepsy. Other disorders (including other types of encephalitis) can resemble Rasmussen syndrome, so the diagnosis should be made after careful consideration by a team of specialists.
Our center receives requests for consultation about Rasmussen syndrome from around the world. When you call to schedule an appointment, you may be asked to prepare the following records:
- Clinic notes from emergency care, hospital admissions and neurological assessments
- Recent laboratory results, including blood work and cerebrospinal fluid results
- Imaging from the MRI studies and EEGs
- Any other significant documents
Please contact our medical office coordinator at 410-955-9100 for assistance in submitting this information and scheduling your appointment.
Johns Hopkins physicians are recognized as leaders in the treatment of Rasmussen syndrome, providing specialized and compassionate care.
Other doctors and health care professionals with special expertise in Rasmussen Syndrome may be part of your care team, including:
- Critical care doctors and nurses
- Physical, speech and occupational therapists
- Child life specialists
- Behavior psychologists
- Social workers
Rasmussen Syndrome Research
Our patients benefit from collaborative research that addresses the quality of life, physical and mental aspects of the condition and the child. Johns Hopkins researchers are dedicated to improving functional outcomes after surgery and advancing the understanding of the underlying immune changes that occur in Rasmussen syndrome. Our goal is to provide your child with the best chance at recovery.
Principal Investigator: Adam L. Hartman, MD
The purpose of this study is to assess outcomes in a variety of functional domains after surgical resection of an affected hemisphere in patients with Rasmussen syndrome, also known as hemispherectomy. We are particularly interested in the assessment of physical function (including walking, leg function, use of the affected arm and hand, language function, cognition, vision, and ability to participate in activities of daily living), as well as quality of life. Our ultimate goal is to understand which factors are most important to patients and their families as they attempt to achieve and regain as much function as possible.
Principal Investigator: Carlos Pardo, MD
The purpose of this study is to create a robust electronic database for patient information, as well as to collect samples from individuals being evaluated or treated for central nervous system diseases (including Rasmussen syndrome, multiple sclerosis, transverse myelitis, acute disseminated encephalomyelitis, neuromyelitis optica, among other conditions). We are also collecting information and samples from patients with other neurologic diseases such as migraine, neuropathy and sarcoidosis. Furthermore, volunteers can participate as healthy controls to support various research efforts.
We are collecting these samples and medical information so that they can be made available to research scientists who study these diseases. The goal of this research is to improve our ability to diagnose these conditions.