Action Medical Research and the MS Society are jointly funding what is said to be the first major UK scientific study into multiple sclerosis (MS) in children. The paediatric MS study is being led by Birmingham Children’s Hospital and will follow a group of children for five years at a cost of around £400 000. Other centres involved are Oxford, Bristol, Nottingham, Evelina (London) and Great Ormond Street Hospital (London).

In their Press release about the new study Action Medical Research and the Multiple Sclerosis Society say that awareness of MS in children – who have been known to show symptoms at just 13 months old – is low leading to delays in diagnosis and poor treatment and care. When asked, a large number of adults with MS remember symptoms they may have experienced when younger, even though they were not diagnosed until later in life. The first case of childhood MS was diagnosed in 1922. Onset of symptoms has been known to occur in a child just 13 months old and children are diagnosed, almost exclusively, with relapsing remitting MS. Worldwide, the frequency of childhood MS is estimated at 1.5-2.5 per 100,000 compared to 50 per 100,000 adults. The accumulation of disabilities and development of secondary progressive MS most commonly occur more than 15 years after the first MS symptoms in children. This means children with MS have a favourable short-term outlook in terms of their condition, but 50 per cent are predicted to enter secondary progressive MS by the age of 30.
    Action Medical Research is funding half the costs of the study as part of its strategy to focus on child health, often a neglected and underfunded area of research.
    Dr Tracy Swinfield, Director of Research at Action Medical Research said: 'MS in children is poorly understood and we are delighted to be supporting this major scientific study into this difficult condition.'
    Biomedical Research Manager for the MS Society, Dr Doug Brown, said: 'If we can pin down what happens very early on in MS, this will give us vital clues as to how the condition develops in adulthood.
    'MS isn’t considered to be a childhood condition but we need to beat this misconception because it makes life tougher for those young people who live with it day in, day out.'
    MS is the most common disabling neurological condition in young people but there is an assumption it is an older person’s condition and that it cannot be diagnosed in children. This is one of the many myths the MS Society hopes to dispel during MS Week (27 April to 03 May).
    Current knowledge and research into the number of children affected by the condition is severely lacking, but studies so far suggest that onset of MS occurs before the age of 16 years in 0.4 to 10.5 per cent of cases, which could be anything up to 9000 people in the UK.
    The study, led by Dr Evangeline Wassmer, aims to find out how many children are affected by demyelination (a first MS-like illness) and MS in the UK, and to identify which children are more likely to develop MS after an initial demyelinating event.
    Dr Wassmer said: 'The study will create a group of paediatric MS cases that can be followed during the course of the project and beyond into adulthood, providing the basis for an extremely valuable long-term study.'

    Action Medical Research is a national medical research charity which for nearly 60 years has been instrumental in significant medical breakthroughs including the development of the UK polio vaccine and ultrasound scanning in pregnancy. The charity currently funds over 70 research projects into serious diseases and conditions, including meningitis, pneumonia, cerebral palsy and epilepsy. www.action.org.uk
    The MS Society is the UK’s largest charity dedicated to supporting everyone whose life is touched by MS, providing respite care, an award-winning freephone helpline (0808 800 8000), specialist MS nurses and funds around 50 vital MS research projects in the UK. www.mssociety.org.uk