Brunner

The purpose of this study is to create an electronic database of patients diagnosed with systemic lupus erythematosus (SLE). This database will serve as a resource list of patients to contact for clinical trials of new medicines. People in the database will be individually contacted about trials they may be eligible for and have the choice of whether to participate. Data to be collected include name, date of birth, address, phone number and clinical information from medical records and  questionnaires completed by physicians and patients. No blood tests are required.

Contact study coordinator: Jessica Hummel, Jessica.Hummel@cchmc.org, 513-803-2118

This study addresses the question of how hormonal changes in puberty affect lupus in girls who have been diagnosed with lupus. The study includes visits every three months over an approximate three-year period, blood draws and urine samples. Physical examinations are performed and questionnaires completed. 

Contact study coordinator: Jessica Hummel, Jessica.Hummel@cchmc.org, 513-803-2118

This project aims to achieve consensus about QI for jSLE that is guided by the available scientific evidence using appraisal of the medical literature and consensus methodology around the world and developing targeted interventions that standardize healthcare delivery processes using the QI in a selected number of pediatric rheumatology patients.
 

The purpose of this research study is to find out whether mood, thinking, memory, visual skills and coordination skills of individuals with childhood-onset systemic lupus erythematosus are different from individuals without lupus.  In this investigation, we will use questionnaires to determine if there is an easy way to identify individuals with lupus who have changes in mood, thinking, memory, visual skills and coordination skills as a result of lupus.

Contact study coordinator: Jessica Hummel, Jessica.Hummel@cchmc.org, 513-803-2118

The purpose of this study is to collect kidney biopsy samples and urine samples both at the time of a kidney biopsy and to determine better ways to measure and monitor kidney (renal) disease activity and damage in systemic lupus erythematosus (SLE, lupus) patients. The long-term goals of the research study is to develop and validate a Child Renal Activity Index (C-RAI) and a Child Lupus Nephritis Index for Damage (C-LID) to assess and monitor kidney disease / damage noninvasively. It is also hoped to assist in limiting the number of serial kidney biopsies performed on SLE patients in the future.

Contact: Shannen Nelson, Shannen.nelson@cchmc.org, 513-636-5484, or Jessica Hummel, Jessica.Hummel@cchmc.org, 513-803-2118

The purpose of this research study is to find out whether mood, thinking, memory, visual skills and coordination skills of individuals with childhood-onset systemic lupus erythematosus (lupus) are different from individuals without lupus. Lupus is a complex autoimmune, rheumatic disease with symptoms that can range from mild to severe, affect any part of the body and seriously challenge patients and their families. 

Contact study coordinator: Aimee Baker, aimee.baker@cchmc.org, 513-803-2118

The purpose of this study is to test the safety of a drug called triptorelin (Trelstar) when used to protect the ovaries (female reproductive organs) during cyclophosphamide therapy for systemic lupus erythematosus (SLE). This is an intervention trial, which means it involves treatment, in this case injections of triptorelin or a placebo, an inactive substance. Neither the patients nor the staff members will know who is receiving the drug and who is getting the placebo. The study requires 23 visits over 23 months.  All visits will include an examination by a physician, an evaluation for side effects, questionnaires and review of study diaries. Other requirements include blood and urine samples, ultrasounds of the ovaries and bone density scans.

Contact study coordinator: Shannen Nelson, shannen.nelson@cchmc.org, 513-636-5484

This project is being done in collaboration with Dr. Ahern in Pittsburgh.  This study looks at various lupus biomarkers to determine which might most accurately determine the severity of kidney involvement in children with lupus.