Understanding how lupus develops and progresses over time

Plain-English translation of NCT00001372 on ClinicalTrials.gov ↗ ·

What is this trial?

This is a long-term research study designed to help scientists understand how lupus develops and why it damages the body over time. Researchers will follow people who have lupus (or may have lupus), their family members, and healthy volunteers to collect medical information, blood samples, and sometimes urine samples. The goal is to identify new ways to diagnose lupus earlier and find better treatments.

Lupus is a complex disease that affects many people—especially young women—but scientists still don't fully understand why some people get sicker than others or how to predict organ damage. This study aims to fill those gaps by tracking patients over many years and studying their genetics and blood vessel health.

Do you qualify?

You likely qualify if…

you have been diagnosed with lupus or have symptoms that suggest lupus
you are at least 3 years old (healthy relatives can participate; healthy volunteers must be 18+)
you are able and willing to give permission to participate in research
you can commit to follow-up visits and provide blood, urine, or skin samples when asked
you may be a first- or second-degree relative (parent, sibling, child, grandparent, aunt, uncle, or cousin) of someone already enrolled in the study

You likely don't qualify if…

you have HIV infection or an active cancer diagnosis
you have other serious medical conditions that would make it difficult to interpret lupus-related test results
you are unable to travel to the National Institutes of Health (NIH) for study visits
you are unwilling to provide blood samples or other biological materials for research
you have an implanted device (such as a pacemaker, cochlear implant, or certain aneurysm clips) that cannot be safely used during MRI scans, if you participate in the heart and blood vessel imaging portion

What participation looks like

You will have visits at the NIH Clinical Center where you'll receive a physical exam and answer questions about your lupus symptoms and medical history. You'll be asked to provide blood and urine samples for research, including genetic testing. Some participants may also have heart and blood vessel imaging tests (MRI scans) to understand how lupus affects these systems. Your doctor may adjust your regular medications as needed, and the research team will work closely with your own physician to ensure you receive standard medical care throughout the study.

Understanding how lupus develops and progresses over time

What is this trial?

Do you qualify?

What participation looks like

Trial locations(1 site)