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revised 10-Dec-2021
Network Projects and Studies
This study, funded by the National MS Society includes patients with suspected onset of demyelinating disease of the central nervous system (CNS) prior to age 18. The purposes of the database are to describe the number and characteristics of patients with suspected early onset of demyelinating disease and to support hypothesis generation and study design development for clinical trials and observational studies to be carried out by the NPMSC. Patient data include demographics and longitudinal developmental and clinical data.
The primary objective of this Network study, funded by the National Institute of Neurological Disorders and Stroke (NINDS) (1R01NS071463-01, PI Waubant), is to determine if risk factors identified for adult MS such as HLA-DRB1 1501/1503, Epstein-Barr virus (EBV), 25(OH) vitamin D3 insufficiency, and exposure to cigarette smoke are also risk factors for pediatric MS, and if there are interactions between them. This objective is being addressed in a prospective study of 640 early pediatric-onset MS cases and 1280 matched controls. Several additional environmental factors are also being investigated using a comprehensive Environmental Assessment developed by the University of California San Francisco Department of Neurology and University of California Berkeley School of Public Health.
This study was awarded funding by the Guthy-Jackson Charitable Foundation. In this study, we are comparing the clinical and radiological presentation and course of pediatric-onset Neuromyelitis Optica (NMO) spectrum disorders to other demyelinating disorders using the PeMSDD database. These data will lead to an improved understanding of the presenting features of NMO in children and enhanced diagnosis and treatment of this disorder. A final objective of the study is to summarize current collection of biological samples in pediatric NMO patients.
The overarching goal of this study, funded by the National MS Society, is to advance the understanding of how commensal bacteria are associated with MS. The longer term objectives of this research are to understand whether the microbiomes modify MS course and to develop preventative and therapeutic strategies for MS. The ongoing study of risk factors in pediatric MS is leveraged to collect nasal, oral, and stool samples in 70 cases and 70 matched controls. Examining children with the disease overcomes the confounders introduced from the study of an adult patient population that over the years has had multiple exposures irrelevant to disease onset that have altered their microbiota.
This study, funded by the National MS Society (Grant #: HC-1411-02009) aims to gain patient and family perspectives on proposed and ongoing research studies and clinical trials as well as priorities for research and optimal means to include pediatric MS patients and their families in such studies. A major goal will be to engage patients and families in how best to obtain long term medical and patient-centered outcomes in clinical trials.
This study, funded by the National MS Society, aims to identify the earliest signs of cognitive involvement in youth with pediatric-onset Multiple Sclerosis (MS) and those at risk for future decline by measuring cognitive processing speed, change in cognitive processing speed over two years, and longitudinal predictors of cognitive processing speed.
A key question asked by many patients with MS is whether diet affects MS course. The primary objective of this study, funded by the National MS Society, is to determine whether dietary intake (particularly fats and vegetables) is associated with disease course in pediatric onset MS. In this prospective study, the percentage of calories from fat and vegetable intake will be determined and compared with the relapses and other measures of disease activity over the course of three years. Metabolic pathways of tryptophan and fatty acids will also be studied to help determine their contribution to the immune response and inflammation. The goal is to enroll 500 subjects with pediatric onset MS. This study will contribute to a better understanding of if and how diet could potentially be modified to improve disease course.
This study aims to establish a cohort of pediatric onset radiologically isolated syndrome to examine outcomes consistent with multiple sclerosis and to determine potential risk factors for development of MS. The information from this study can help to better characterize this cohort and to look for risk factors to assist physicians with management decisions. This study is funded by the National MS Society.
An important aspect of a clinical registry is the ability to inform clinical trials with information such as how many individuals in the registry would meet entry criteria for the trial and what side effects are reported when disease modifying therapies are used in the pediatric population. This study, funded by Roche, aims to explore real world data from the network’s clinical registry to help answer some of these questions. The goal is to design a clinical trial that will be acceptable to regulatory agencies and ultimately increase access to important medications for people living with pediatric onset multiple sclerosis.
This study, funded by Cleveland Clinic, aims to determine the proportion of individuals with pediatric onset multiple sclerosis that meet NEDA criteria at 6-month intervals following their diagnosis. Differences between individuals that did and did not achieve NEDA will be determined and used to predict the odds of having NEDA based on demographics such as age, gender, race and clinical characteristics such as disease duration and medication use.
