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Developing a provisional, international minimal dataset for Juvenile Dermatomyositis: for use in clinical practice to
Liza J McCann1, Katie Arnold2, Clarissa A Pilkington3
1Alder Hey Children's NHS Foundation Trust, Eaton Road, Liverpool L12 2AP, UK.
Insights
A preliminary minimal dataset for juvenile dermatomyositis (JDM) was developed to improve international collaboration and research. This dataset will standardize data collection for better understanding and treatment of this rare childhood autoimmune disease.
Area of Science:
- Rheumatology
- Pediatrics
- Autoimmune Diseases
Background:
- Juvenile dermatomyositis (JDM) is a severe childhood autoimmune inflammatory myopathy.
- International collaboration is crucial for JDM clinical trials, disease understanding, and improving long-term outcomes.
- Existing collaborative initiatives lack a standardized minimal dataset for JDM.
Purpose of the Study:
- To propose a preliminary minimal dataset for juvenile dermatomyositis (JDM).
- To establish a foundation for an international consensus-approved minimum core dataset.
- To facilitate data integration for clinical care and research across centers.
Main Methods:
- A working group of international JDM experts developed a provisional minimal dataset.
- Scrutiny of clinical and laboratory variables from existing idiopathic inflammatory myopathies databases.
- Informed by published literature and detailed analysis of the JDM Cohort Biomarker Study (UK and Ireland).
Main Results:
- A provisional minimal JDM dataset with a glossary of definitions has been produced.
- The dataset collects information at diagnosis (demographics, criteria, pre-diagnosis treatments) and during follow-up (disease activity, organ involvement, treatments, assessments, outcomes).
- Variables cover active muscle/skin disease, major organ involvement, constitutional symptoms, investigations, physician global assessments, and patient-reported outcomes.
Conclusions:
- An internationally agreed minimal dataset enhances collaboration and communication among JDM research groups.
- It provides a minimal standard of care and enables analysis of larger patient cohorts for greater disease understanding.
- The preliminary dataset is ready for development into a consensus-approved core dataset and wider testing.
Background:
Juvenile dermatomyositis (JDM) is a rare but severe autoimmune inflammatory myositis of childhood. International collaboration is essential in order to undertake clinical trials, understand the disease and improve long-term outcome. The aim of this study was to propose from existing collaborative initiatives a preliminary minimal dataset for JDM. This will form the basis of the future development of an international consensus-approved minimum core dataset to be used both in clinical care and inform research, allowing integration of data between centres.
Methods:
A working group of internationally-representative JDM experts was formed to develop a provisional minimal dataset. Clinical and laboratory variables contained within current national and international collaborative databases of patients with idiopathic inflammatory myopathies were scrutinised. Judgements were informed by published literature and a more detailed analysis of the Juvenile Dermatomyositis Cohort Biomarker Study and Repository, UK and Ireland.
Results:
A provisional minimal JDM dataset has been produced, with an associated glossary of definitions. The provisional minimal dataset will request information at time of patient diagnosis and during on-going prospective follow up. At time of patient diagnosis, information will be requested on patient demographics, diagnostic criteria and treatments given prior to diagnosis. During on-going prospective follow-up, variables will include the presence of active muscle or skin disease, major organ involvement or constitutional symptoms, investigations, treatment, physician global assessments and patient reported outcome measures.
Conclusions:
An internationally agreed minimal dataset has the potential to significantly enhance collaboration, allow effective communication between groups, provide a minimal standard of care and enable analysis of the largest possible number of JDM patients to provide a greater understanding of this disease. This preliminary dataset can now be developed into a consensus-approved minimum core dataset and tested in a wider setting with the aim of achieving international agreement.
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