Christina Boros

“So far, there have been no large enough research studies to answer all of the questions patients and parents ask about long term outcomes in myositis."

Longterm Outcomes in Juvenile Inflammatory Myopathies

This study aims to find out what happens to people who have had myositis in childhood when they become young adults.

So far, there have been no large enough research studies to answer all of the questions patients and parents ask about long term outcomes in myositis. These questions include how myositis affects quality of life, education and employment as a young adult. Others are whether myositis or the drugs used to treat it cause damage to the body.

To do this we have been linking the information collected in the Juvenile Dermatomyositis Cohort Biomarker Study and Repository with questionnaires designed to collect data regarding the outcomes mentioned above. The questionnaires are for people who had myositis as children and who are now 16 years of age or over.

We are using the information to try to predict how myositis’ features at diagnosis as well as during treatment might affect long term outcomes in these patients. We also hope to have better  answers to the questions patients and parents ask about myositis in childhood.