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Children and Teens Needed for Lupus Outcomes Research Study

What is the purpose of this study?

The purpose of this research study is to find better ways to measure and monitor kidney (renal) disease activity and damage in people with Systemic Lupus Erythematosus (SLE). The study will look for indicators of kidney disease as well as determine the relationship between the levels of biomarkers in urine and blood and the presence, severity and future development of SLE renal disease.

Who can participate?

You or your child may be eligible to participate if you have been diagnosed with SLE and have one of the following:

Focal segmental glomerulosclerosis
Active juvenile arthritis
Fibromyalgia (with no inflammation)

OR

Have had a kidney biopsy as part of your standard of care

There is no age limit for this study.

What is involved?

You and your child will be in the research study for 6 months. Participation in this research study will involve a study visit about every 3 months and when/if you or your child has worsening of kidney involvement (a renal flare). Study visits will be combined with regularly scheduled rheumatology appointments at Cincinnati Children’s.

A detailed list of procedures will be provided to anyone interested in knowing more about this study. Here are some of the procedures:

Your child will be asked to:

Undergo a physical exam given by your rheumatology doctor
Complete questionnaires about your health and well-being as well as about how active your disease is and whether there is any long-term damage due to SLE
Give urine and blood samples

What are the benefits?

You or your child may not receive a direct medical benefit. However, the information gained from this study may help other patients with SLE in the future.

Will I get all the facts about the study?

You, as a participant or parent interested in having their child participate, will be given a consent form that thoroughly explains all of the details of the study. The form covers all of the procedures, the risks, the benefits, the pay, who to contact with questions or concerns and more. A member of the study staff will review the consent form with you and will be sure that all of your questions are answered.