Research and Innovation | Overview
Children experiencing neuro-immune disorders sometimes have cognitive difficulties, such as trouble paying attention and learning. We are on the lookout for any such difficulties. To identify problems, the neuropsychologist on our team can perform specialized testing. With your permission, our educational liaison can work with your child’s school to make changes that will help address the issues. These detailed assessments and recommendations can be hugely important in helping our patients succeed in school in the midst of their illness and treatment.
Our social worker can also help you find any resources you need, both at Boston Children’s and in your community.
You can also learn about the innovative care provided throughout the Boston Children’s Department of Neurology here.
Current research studies enrolling participants
What is this study about?
Clinical data registries are one of the first steps in furthering research and treatment efforts, and much remains unknown about the causes, outcomes, and effective treatments for Opsoclonus Myoclonus Syndrome (OMS), a rare paraneoplastic disorder characterized by random, chaotic eye movements, balance issues, limb jerking, and/or behavioral and sleep disturbances. This study aims to increase understanding of OMS in the scientific and medical community through the creation of an international database of clinical information from patients diagnosed with pediatric-onset OMS in order to explore the causes of this disease, and ultimately drive better treatments.
Who can be in the study?
Children, teens, or adults diagnosed with Opsoclonus Myoclonus Syndrome prior to the age of 18.
What does study participation involve?
Participation in this research study involves a one-time discussion with a coordinator and providing consent for our research team to review your child’s medical history and record pertinent information into our database. Our study team may occasionally reach out with follow-up questions or to request additional information on your child’s course of OMS treatment.
Who do I contact if I am interested in hearing more about the study?
email: firstname.lastname@example.org | phone: 617-919-6965