The purpose of this study is to develop a registry that will serve as a resource for clinical and translational research studies in systemic lupus erythematosus (SLE, lupus). Individuals with lupus can participate in several ways. They can contribute information that is part of their medical record; they can agree to the use of left-over blood, urine and tissue samples; or they may even be willing to provide extra blood samples on occasions. Data to be collected for this study includes name, date of birth, address, phone number and clinical information from medical records and questionnaires completed by physicians and patients. People participating in this study may be individually contacted about trials they may be eligible for and have the choice of whether to participate.

This study addresses the question of how hormonal changes in puberty affect lupus in girls and boys who have been diagnosed with childhood-onset 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. 

This study addresses the question of how best to measure effectiveness and safety of new medications and the degree of tissue damage in children with lupus. Patients participating in this study will be asked to complete questionnaires. Information will be pulled from the patient’s medical history.

Patients with lupus often have chronic pain and are tired. The extent to which this is the case among children and adolescents with lupus is unclear. Further, risk factors for developing pain and fatigue are not well described. The purpose of the study is to answer the question how common and how severe pain in children with lupus is. The study also aims to answer the question of how pain and fatigue can be treated in children and adolescents with lupus.

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.

The purpose of this study is to collect kidney biopsy samples and urine samples both starting at the time of a kidney biopsy and to help determine better ways to measure and monitor kidney (renal) disease activity and damage in systemic lupus erythematosus (SLE, lupus) patients. It is also hoped that this research will better assess the effectiveness of LN therapies and assists in limiting the number of serial kidney biopsies performed on SLE patients in the future.

Belimumab has recently been approved for the treatment of adults with moderate to severe SLE. In this clinical trial children and adolescents with childhood-onset lupus are studied to find the most effective dose of belimumab in children and the safety of this medication. Some patient will receive placebo during part of the study. 

Messenger RNA molecule take instructions copied from the DNA in the nucleus of the cell to the ribosomes in the cytoplasm to make proteins. A kidney consists of many different cell types. The purpose of this research study is to find out how lupus affects the messenger RNA production in each of the various kidney cells. This information may be useful to develop new medications for lupus nephritis.

 

Lupus is a complex autoimmune, rheumatic disease with symptoms that can range from mild to severe. It can affect any part of the body and seriously challenge patients and their families. The purpose of this research study is to find out how lupus affects the brain. Patients with lupus and one of their friends are receiving a special magnetic resonance image (MRI) to assess whether their blood-brain barrier, a tissue that separates the brain tissue from immunological changes in other parts of the body. All patients will undergo formal testing of their thinking ability (also cognition) by a specialist.

 

 

Micro-RNAs are small protein particles that regulate among others immune responses. The objective of this study is to find out whether the various types of micro-RNAs could serve as new laboratory tests for lupus nephritis when measured in the blood and the urine.

 

The National Institutes of Health have developed new questionnaires to measure quality of life of children, call PROMIS (Patient Reported Outcomes Measurement Information System). The study aims to address the question, whether these questionnaires can be used for the assessment of the quality of life of children with lupus.