An internationally agreed consensus core dataset for Juvenile Dermatomyositis (JDM)

The forms contained on this site represent an internationally agreed dataset for Juvenile Dermatomyositis (JDM), designed for clinical use, to enhance collaborative efforts and allow integration of data between centres. The dataset has been developed through a robust international consensus process that has captured the opinions of healthcare professionals, patients and parents.

Demographic and diagnostic data are contained within Form A collected at baseline visit only, disease activity measures are included within Form B collected at every visit, and disease damage items within Form C, collected at baseline and annual visits thereafter. An accompanying glossary of definitions is provided, along with muscle strength testing sheets.

For further information about the forms or the study, please contact Dr Liza McCann or Professor Michael Beresford:
Liza.mccann@alderhey.nhs.uk
M.W.Beresford@liverpool.ac.uk

References / further reading:

  1. McCann LJ, Arnold K, Pilkington C a, et al. Developing a provisional, international Minimal Dataset for Juvenile Dermatomyositis: for use in clinical practice to inform research. Pediatr Rheumatol 2014;12:31. doi:10.1186/1546-0096-12-31
  2. McCann LJ, Kirkham JJ, Wedderburn LR, et al. Development of an internationally agreed minimal dataset for juvenile dermatomyositis (JDM) for clinical and research use. Trials 2015;16:268. doi:10.1186/s13063-015-0784-0
  3. McCann LJ, Pilkington CA, Huber AM et al. The development of a consensus core dataset set in Juvenile Dermatomyositis for clinical use to inform research – submitted 2017

Study Funded by Arthritis Research UK [grant number 20417]

Linked forms