Members of the Lupus Center health care team at Cincinnati Children's lead or participate in many clinical studies of lupus. Here are some examples.
Measuring Flares: There is no commonly accepted standard for measuring how often flares occur among children with systemic lupus erythematosus (SLE). A study among 91 children with SLE found that tools used to measure flares in adults were not sensitive enough for use among children. Getting more accurate data in the future requires better tools for measuring flares among children.
Quality of Life Issues: Systemic lupus erythematosus (SLE) impacts many aspects of health-related quality of life (HRQoL). Measuring HRQoL can provide valuable information about the effects of lupus and treatment of lupus. The study involved 91 children, their parents and physicians. Patients reported that an increase in pain and a decrease in physical function were closely related to a decline in HRQoL associated with a flare . Both disease improvement and stable disease were associated with increases in HRQoL. Parents were considered acceptable overall when serving as proxies to report HRQoL, but their ratings were less sensitive to change than ratings from the patients themselves.
Identifying Kidney Involvement: The main factor in determining a poor prognosis for patients with systemic lupus erythematosus (SLE) is involvement of the kidneys. Two studies looked for biomarkers, substances in the body that could indicate the presence of kidney involvement. One study analyzed urine samples from people with lupus, some who had kidney involvement and some who did not, and from control patients who had a form of juvenile arthritis. The researchers found that concentrations in the urine of two substances represent new or novel biomarkers of kidney involvement in lupus patients. These substances are transferrin and ceruloplasmin. Another study found that levels of neutrophil gelatinase associated lipocalin (NGAL) in the urine and possibly in plasma represent new or novel biomarkers for pediatric SLE. NGAL is a member of the lipocalin family of proteins that has been studied in acute and other chronic kidney injury.
Predictors of Atherosclerosis: A study among 221 pediatric patients with systemic lupus erythematosus (SLE) investigated factors that could predict the development of atherosclerosis. This is a condition caused by the build-up of cholesterol and other substances in the lining of the arteries. Among the factors found to be possible predictors of atherosclerosis are being male and taking prednisone (Deltasone", Orasone") and azathioprine (Imuran"), two drugs used to treat SLE. Prednisone is a corticosteroid and azathioprine is an immunosuppressive.
Assessing Cognitive Dysfunction: A computerized battery of tests may be useful in determining if someone with childhood-onset systemic lupus erythematosus (SLE) has cognitive dysfunction—problems with thinking, reasoning, and other mental tasks. The series of tests, known as the Pediatric Automated Neuropsychological Assessment Metrics (Ped-ANAM, short version), can be completed in 15 to 25 minutes and can be repeated frequently without a learning curve. Traditional testing requires three or more hours testing with a licensed psychologist. The study involved 39 patients, ranging in age from 10 to 21 years old, with childhood-onset SLE. As with lupus, most were female. Participants took the test twice during one study visit.