Patients benefit from collaborative research that addresses the quality of life, physical, and mental aspects of the condition and the child.
With the focus of providing innovative care to children with Rasmussen syndrome, 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 research offers access to findings from international collaborations such as the RE Children’s Project. The goal is to provide your child with the best chance at recovery.
Study Title: Assessment of Function After Hemispherectomy
Principal Investigator: Adam L. Hartman, MD
Summary: 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.
Study Title: Johns Hopkins Neurology Biorepository
Principal Investigator: Carlos Pardo, MD
Summary: 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 in order 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 upon our ability to diagnose these conditions.