Who can participate?
Children, teens and adults (8 years and older) who:
- Have been diagnosed with Pediatric Systemic Lupus Erythematosus (pSLE, lupus) at age 20 or younger
- Are regularly followed for medical care at Cincinnati Children’s
- Are able to see and use the computer
What will happen in the study?
If you (if you are a participant who is at least 18) or your child qualifies, and you decide you want to participate, you or your child will be in this research study for about 1 year and have 1 study visit.
During the study visit, you or your child will be asked to answer questions on paper and/or a laptop computer about your family background (including age, race, ethnicity, education level, employment and family living situation) and health.
In addition, you or your child will also be asked to complete measures of pain, sleep, fatigue, coping, catastrophic thinking (helplessness), depression, physical functioning, and quality of life.
The entire research study visit will last about 1 hour and 45 minutes.
Parents interested in having their child participate will be given a consent form that thoroughly explains all of the details of the study. A member of the study staff will review the consent form with you and will be sure that all of your questions are answered.