Welcome to the web site of the International Pediatric Multiple Sclerosis Study Group (IPMSSG). The unifying vision of the IPMSSG is to optimize worldwide care, education and research in pediatric multiple sclerosis (MS) and other acquired inflammatory demyelinating disorders of the central nervous system (CNS).
The fundamental goal of the IPMSSG is to foster opportunities for collaboration to enhance our understanding of the care of children and adolescents (prior to the 18th birthday) with pediatric MS and related disorders, and to maximize international participation in activities of the group.
The fundamental belief of the IPMSSG is that enhanced worldwide collaboration in educational, research and outreach activities will improve the quality of care, increase the quality and pace of research, and increase awareness and understanding of pediatric MS and related disorders. It is the belief that investigation into pediatric MS and related disorders will improve our understanding of MS in general.
In the spirit of collaboration, the IPMSSG provides a forum, and encourages its members to communicate information about their initiatives. Where such initiatives are developed due to the contacts gained by membership in the IPMSSG, reference is made to this facilitating role of the group in publication of research outcomes.
To date the Study Group:
Has developed a set of consensus (working) definitions for various acquired CNS demyelinating conditions including pediatric MS
Has developed 2 flagship proposals
Research project: Earliest events in MS: Environmental risk factors in childhood MS
Clinical project: Registry to evaluate therapeutic practices in complicated, acquired demyelinating conditions
Has established a preliminary evaluation and diagnostic workup
Has authored a series of eight peer reviewed articles on pediatric MS and related disorders published in the American Academy of Neurology’s journal Neurology
Is poised to initiate global research initiatives.
“The IPMSSG represents an important effort to better understand the causes and effects of childhood-onset multiple sclerosis and related demyelinating disorders. Key initiatives that this group addresses are, the identification of preventative measures, and ways to improve access to care and treatment for children worldwide.” Dr. Tanuja Chitnis, Chair, USA
"The diagnosis of MS in children is rare. Because the disease is largely found in adults and symptoms can come and go over time, paediatricians typically do not suspect MS in a child with blurry vision, numbness and fatigue. Although its recognition is increasing worldwide, many issues remain unexplored: clinical and demographic features; disease progression; impact on the educational, cognitive and behavioral development of children and adolescents with MS and the bearing on potential pathogenic mechanisms. The drugs currently available to treat MS in adult patients have not yet been extensively studied in children. Research in paediatric MS has been limited by the paucity of patients in any one center. The IPMSSG will optimize worldwide care, education and research in paediatric MS and we believe that enhancing collaboration in these areas will ultimately improve awareness and the quality of care of children with MS and related disorders."
Dr Silvia Tenembaum, Argentina
"With the increasing recognition of MS in children comes increasing concern regarding the physical and cognitive morbidity of the disease in this population. The environmental triggers and earliest aspects of MS pathobiology may be particularly amenable to discovery in children with MS, who by virtue of their young age, are uniquely close to the events responsible for MS onset. Comprehensive collaboration at an international level is required if we are to improve the outcome for children and teenagers with MS, and if we are to appreciate the insights into MS that these patients can provide."
Dr Brenda Banwell, Canada
“In the last few years there has been an increasing interest on multiple sclerosis with onset during infancy or adolescence, and many studies have been recently published on epidemiology, diagnosis, prognosis, treatment and other relevant topics. The possibility to make an early and correct diagnosis opens the possibility to manage and to treat the disease in the best way. Only an International collaboration will provide further useful insights in clinical care.”
Dr. Angelo Ghezzi, Italy
"Children with MS represent an under-recognized, under-served group. Due to lack of awareness that children can get this disease, their diagnosis and treatment is sadly often delayed. Educational initiatives and increased clinical care programs are sorely needed. Research on pediatric MS is also extremely important. Due to the short interval between potential environmental exposures and onset of the disease, studying children with MS may help unlock previously hidden answers to the causes of MS for all affected individuals. The IPMSSG is an exciting collaborative effort whose mission is to advance the clinical care, awareness, and research regarding pediatric MS."
Dr Lauren Krupp, USA
"We all now know how important it is to treat MS early. We also know that, over time, many people with MS will develop disabilities. The huge difference is that these disabilities will be there so much earlier in children with MS. We need to do more to understand childhood MS and research will allow better and more effective therapies to be developed. The IPMSSG will be there to make a difference."
Dr Andrew Kornberg, Australia
"I have the privilege to look after children with Multiple Sclerosis and other acquired inflammatory demyelinating disorders in the UK. My long term goal is to improve the quality of care of children with MS in the UK and internationally."
Dr. Evangeline Wassmer
"MS in children belongs to the vast group of ‘rare diseases’. Only an international approach comparing cohorts from different countries with different clinical habits will give us clues to understand the disease and define its difference from MS in adults. This international level is also the only one allowing formal therapeutic trials and specific evaluation of resistant cases. I really look forward to the actual start of common projects."