Developing a provisional, international minimal dataset for Juvenile Dermatomyositis: for use in clinical practice to inform research.

ABSTRACT:

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 colla

SUBMITTER: McCann LJ 

PROVIDER: S-EPMC4113599 | biostudies-literature | 2014

REPOSITORIES: biostudies-literature