Needed: Children, Teens and Adults Diagnosed with Systemic Lupus Erythematosus (pSLE) at Age 20 or Younger

Why are we doing this research?

Cincinnati Children’s is conducting a research study, sometimes known as a clinical trial or clinical study, to evaluate pain and fatigue and their effects on quality of life as well as to develop a treatment to reduce those effects for patients with pediatric lupus.

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

Conditions

  • Lupus

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.

What are the good things that can happen from this research?

You or your child will not receive a direct medical benefit from participating in this research study. However, we hope the information learned from this study will improve the way that health status from the patient’s point-of-view is measured and therefore, benefit patients with chronic medical conditions in the future.

What are the bad things that can happen from this research?

A detailed list of possible side effects for this research study will be provided to those participants, parents or guardians interested in knowing more about this study.

Will you/your child be paid to be in this research study?

Participants will receive $10 for their time, effort and travel.

Contact

Contact Us.Kasha Wiley
kasha.wiley@cchmc.org
513-803-2118
Cincinnati Children’s Hospital Medical Center
Division of Rheumatology
3333 Burnet Avenue
Cincinnati, OH  45229-3039

Study Doctor

Contact Us.Hermine Brunner, MD, MSc
Cincinnati Children’s Hospital Medical Center
Director, Division of Rheumatology