Original articleDuration of illness is an important variable for untreated children with juvenile dermatomyositis
Section snippets
Patient Recruitment
Newly diagnosed children with JDM living in the continental United States were recruited during a 5-year period (1994 to 1999). The JDM Research Registry hotline gave both parents and physicians information about the study, which was publicized at scientific and medical meetings and in medical journals. Registry participation in the last 2 years of the study (1998 and 1999) was facilitated by a website describing the purpose of the study and providing access to the consent form required for
Untreated Children With Newly Diagnosed JDM
A review of the medical records from the 323 enrolled candidates identified 166 children who had not received any steroid or other immunosuppressive agent, including hydroxychloroquine, before the diagnostic testing. Demographic characteristics of this group were comparable to those of the previously described larger group of 323 who enrolled in the NIAMS Registry (Table I),3 as well as the group who had received medical treatment for symptoms before the diagnosis of JDM. The untreated group of
Discussion
Several previous studies have described the symptoms of children with JDM at diagnosis,9, 10, 11, 12 but the patient groups were typically small, and data on duration of untreated disease were not available. The mean age at diagnosis (7.5 years) and sex ratio (2 girls to 1 boy) of the children in our study are similar to those in other published reports12 and also to the data from the Pediatric Rheumatology International Trials Organization (PRINTO) groups, which studied the onset of JDM in 295
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Supported by the National Institute of Arthritis, Muscle and Skin Diseases (NIAMS) (grant NO1-AR-4-2219) (L.M.P.), the Juvenile Dermatomyositis Research Registry (L.M.P.), the Arthritis Foundation (L.M.P), the Marlene Apfelbaum Foundation (L.M.P.), the Pappas Foundation (L.M.P.), P60 AR 30692 (L.M.P. and R.R.G.), and the National Institutes of Health/NIAMS (grant K24 02138) (R.R.G.).