What is this study about? This study, led by physicians and scientists at Boston Children’s Hospital, is focused on understanding the causes and treatments of neuroinflammatory disorders. One particular disorder being studied is Rapid-onset obesity with hypothalamic dysfunction, hypoventilation, and autonomic dysregulation (ROHHAD). The Biomarkers in Neuroinflammatory Disorders (BIND) protocol collects clinical data and biological samples from patients with confirmed or suspected ROHHAD. By studying these samples, the research aims to explore the natural history, causes, and treatment of this disorder. The goal is to identify key biomarkers that could improve diagnosis and treatment. Data and samples collected under this protocol will be stored for future research, potentially contributing to studies on protein abnormalities, genetic factors, and other insights into ROHHAD.
Who can be in the study? Individuals with similar conditions, confirmed or suspected ROHHAD, or first-degree relatives of someone with confirmed or suspected ROHHAD.
What does study participation involve? Participation in this research study involves providing leftover samples from your clinical visits and procedures, such as blood, saliva, surgical tissue, urine, and/or cerebrospinal fluid (CSF). We may also ask for a blood sample during your next clinical blood draw. With your permission, we may contact you in the future about providing additional samples, which will be collected alongside your routine clinical procedures. We will also review your medical history as part of the study, and your samples and data may be shared with other researchers, with all identifying information removed to protect your privacy.
Who do I contact if I am interested in hearing more about the study? Email ROHHAD@childrens.harvard.edu.