“The JDM minimal dataset study aims to get international agreement on a core set of information (data) that clinicians and researchers need to collect on all patients with JDM."
Juvenile dermatomyositis (JDM) is a rare disease, affecting approximately 3 per million children per year. Research groups such as the JDRG and registries or databases like the Juvenile Dermatomyositis Cohort Biomarker Study and Repository (JDCBS), have allowed us to collect information over time that has helped doctors and researchers find out more about the disease. From this, we have become aware that some groups of children and young people with JDM have certain characteristics or patterns of disease that are different from other groups of children with JDM. In order to understand more about the disease and its sub-types, we need to collect information on very large groups of children and young people with JDM. Since the disease is so rare, international collaboration is needed, but it is important that everyone collects the same information over time.
The JDM Minimal Dataset Study :
The JDM minimal dataset study aims to get international agreement on a core set of information (data) that clinicians and researchers need to collect on all patients with JDM. This should allow better communication between research groups in different countries and raise awareness of the disease.
In part 1 of the study, clinicians from all over the world were asked to rank which items they thought were important to collect in all patients with JDM. The results of 2 surveys were discussed during a consensus meeting of experts from all over the world, held in Liverpool, UK, March 2015. In addition, patients and parents have been asked to rank which things they think are important to measure when looking after children and young people with JDM. In the UK, parents and patients have been approached through the network created by the JDRG. Any patient or parent that are seen in a centre not covered by the JDRG can contribute to the study, thanks to Myositis UK, by following the link on their website.
By gathering the opinion of clinicians, patients and parents, our group will create a final dataset that we think all clinicians should be using in their clinical practice. In the final stage of the study, the dataset will be tested in practice to see if it is feasible to collect this information in clinic. The study is ongoing until the end of 2016, after which the results will be made available to all groups.