Established in 2000, the Juvenile Dermatomyositis Cohort Biomarker Study and Repository (JDCBS) is the largest cohort study with linked biobank of its kind for juvenile dermatomyositis (JDM) and related childhood onset inflammatory myositis conditions. The JDCBS has 17 centres from around the United Kingdom contributing data and samples and as such supports multiple national and international clinical, genetic, immunology, antibody, and muscle pathology studies in JDM and myositis.

Data and samples are gathered from patients during routine clinical care on standardised proforma and results of investigations and biospecimens (DNA, serum, PBMC, plasma and quadriceps muscle biopsy where available) are then submitted tocollected into the cohort biomarker study and repositorybiobank. This occurs at presentation and at three to six monthly intervals thereafter for 3 years and then annually or when whilst the patient has active disease.

The dataset* contains information collected in three clinic protocol forms (form A, form B and form C). Form A records demographic and diagnostic information and is completed once, at the initial clinic visit. The second is for recording clinic visit information on disease activity, and is repeated at each 3-6 monthly clinic visit, including the initial visit. Form C is completed annually, including the initial visit, and records information relating to disease damage. There is an additional flare form that collects clinical data of any flares the patient may have had over the year, and a medications form.

For further information regarding this study, visit: https://juveniledermatomyositis.org.uk/

*The dataset described is not currently in use. Migration of the current dataset to the described dataset is underway and will become live in 2022.