Children and Teens Needed for Lupus Outcomes Research Study
Why are we doing this research?
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)
- Have had a kidney biopsy as part of your standard of care
There is no age limit for this study.
What will happen in the study?
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
detailed list of procedures will be provided to anyone interested in knowing
more about this study. Here are some of
Your child will be asked to:
a physical exam given by your
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
urine and blood samples
What are the good things that can happen from this research?
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?
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.
What are the bad things that can happen from this research?
There are no physical risks associated with
this study. Other possible discomforts or risks will be discussed with you or
your child if interested in learning more about the study.
Will you/your child be paid to be in this research study?
or your child will receive $15 for each completed study visit.