Diseases that cause inflammation of the muscles (known as myositis, or idiopathic inflammatory myopathies - IIM) are rare, but serious. The most common form of childhood myositis or IIM, is juvenile dermatomyositis (JDM). JDM affects about 3 children in every million. Click here for more information about IIM and JDM, how they are diagnosed and treated, as well as your frequently asked questions (FAQ).
Because myositis in children is so rare there is a lack of evidence for best ways to treat it. To overcome this in the UK, a network of researchers, scientists, nurses, physiotherapists and doctors who work with children with myositis agreed to work together, and this has led to a large, powerful collection of cases of childhood myositis each with data and samples stored. This study is called the Juvenile Dermatomyositis Cohort Biomarker Study and Repository (UK and Ireland) or JDCBS. The JDCBS is led by Professor Lucy Wedderburn, UCL Institute of Child Health, London. The group of researchers, doctors, physiotherapists, nurses, scientists is called the Juvenile Dermatomyositis Research Group (JDRG).
Previous studies have not been large or detailed enough to answer all the questions doctors and families have about JDM. The JDCBS is now able to start to answer these questions and has already made some very important discoveries in myositis. This group of researchers has been awarded peer reviewed grant funding from several bodies including The Wellcome Trust Action Medical UK, the National Institute of Health Research (NIHR), and The Myositis Association (TMA). Click here to see all our funding bodies.
The JDCBS has full ethical approval and all children and families are asked to join only after patients and families have had a chance to read the study information and agree in writing. All information collected is kept in a confidential coded form. Only the researchers directly involved in the study can look at this information. An independent committee looks at each suggestion for research and decides which projects are allowed to go ahead.
Recent studies have included those on clinical treatments, new drugs for JDM, antibodies in JDM that help define the type of myositis a child has, how careful analysis of muscle biopsy tissue can help predict the severity of disease, how immune system (HLA) genes affect the subtype of myositis, as well as other genes that play a role in JDM, how blood vessels may be altered in JDM and many others. For more details on our current projects and our full project list click here.
For details of publications and papers that have come from the work of the JDRG click here.
For details of the process to apply to the Steering Committee of the JDCBS to carry out a project click here.
To contact the JDRG or the JDCBS Study coordinator email : info@jdrg.org.uk.
