Background

Historically multiple sclerosis (MS) has been viewed as an adult-onset disease and as a result the majority of MS research, services and support programmes have targeted adults.

Since the 1980s, however, an increasing number of cases of MS in children (under 18 years of age) have been recorded worldwide. Initial symptoms have been seen as early as 13 months old, with diagnosis as young as two years of age. Due to a raised awareness of childhood MS amongst neurologists and because of advances in technology, the number of children diagnosed with MS is steadily growing.

Nevertheless, as neurologists so rarely encounter childhood MS, diagnosis may be delayed or more difficult than for adult-onset disease. Because treatments have not been systematically studied, tested or approved for children, childhood MS is often treated in the same way as adult MS.

Caitlin, aged 11, was diagnosed with MS when she was eight years old. Read her story.

The International Pediatric Multiple Sclerosis Study Group (IPMSSG)

The International Pediatric Multiple Sclerosis Study Group (IPMSSG) is a global network of adult and paediatric neurologists, basic scientists, other clinicians, representatives of multiple sclerosis (MS) societies, and other relevant professional organisations whose unifying vision is to optimise worldwide care, education and research in paediatric MS (pMS) and other acquired inflammatory demyelinating disorders of the central nervous system (CNS).

The goal of the IPMSSG is to foster opportunities for collaboration to enhance our understanding of the care of children and adolescents with pMS and related disorders, and to maximise international participation in activities of the IPMSSG.

IPMSSG Steering Committee

The IPMSSG Steering Committee includes the following pMS specialists:

• Dr Silvia Tenembaum (Chair), Director of the Paediatric Multiple Sclerosis Clinic, National Pediatric Hospital Dr. J. P. Garrahan, Buenos Aires, Argentina


• Dr Brenda Banwell, Director of the Paediatric Multiple Sclerosis Clinic, Hospital of Sick Children, University of Toronto, Canada


• Dr Olga Bykova at the Scientific Centre of Children’s Health, Russian Academy of Medical Science, Moscow, Russia


• Dr Angelo Ghezzi of the Centro Studi Sclerosi Multipla dell'Ospedale di Gallarate, Lombardy, Italy


• Dr Folker Hanefeld, Professor of Paediatrics and Child Neurology, Department of Paediatrics and Neuropaediatrics, University of Göttingen, Germany


• Associate Professor Andrew Kornberg, Director of Neurology, Royal Children's Hospital, Director of the National Muscular Dystrophy Research Centre, Melbourne, Australia


• Dr Lauren Krupp, Director of the United States’ National Pediatric Multiple Sclerosis Center, Stony Brook University Medical Center, New York, USA


• Professor Marc Tardieu, Professor of Paediatrics, Head of Paediatric Neurology Unit, Le Kremlin Bicêtre, France

Dr Silvia Tenembaum, Argentina

"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 Brenda Banwell, Canada

"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."

Associate Professor Andrew Kornberg, Australia

"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 Lauren Krupp, USA

"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."

Further information

Please email info@ipmssg.org or visit www.ipmssg.org for further information about the work of the IPMSSG.