Understanding Lupus Research

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About 1.5 million people in the United States have lupus, a disease that happens when the immune system attacks healthy organs and tissues. Of these, 9 out of 10 are women.

Lupus is a complicated disease that can be hard to diagnose and even harder to treat. Scientists are looking at lupus from many different angles so they can better understand what triggers it — and how best to support those who are living with the disease.

Clinical trials for lupus

Clinical trials are studies that test drugs, behaviors or medical devices or other forms of treatment to see how it affects people. Any treatment has to be proven safe and effective in a clinical trial before the Food and Drug Administration (FDA) will approve it.

Clinical trials for lupus may involve testing a new drug or a drug that already exists to treat lupus. Not only do they help researchers learn what works to treat lupus, but they also give people with lupus a chance to try new and possibly very effective treatments before they’re widely available.

The Lupus Research Alliance and the Lupus Foundation of America offer resources to help people with lupus find clinical trials.

Read: Clinically Speaking: Questions and Answers About the Importance of Clinical Trials in Lupus Research >>

Patient-powered research: RAY

Another resource from the Lupus Foundation of America is a data platform called RAY: Research Accelerated by You. RAY allows people with lupus and their caregivers to share their lupus experiences and be actively involved in studying the disease. The information collected by RAY helps researchers develop new treatments and figure out ways to improve the everyday lives of people living with lupus.

Joining RAY involves nothing more than filling out an online survey. Your information is shared with researchers anonymously, meaning it stays 100% confidential.

Observational studies: Lupus Landmark Study

An observational study is one where researchers study a group of people without giving them any treatment or other intervention so they can gather information.

Right now, the Lupus Research Alliance is doing an observational study to help treat lupus. It’s called the Lupus Landmark Study (LLS), and it will follow and collect information from 3,500 people living with lupus.

The Lupus Research Alliance is looking for people to join LLS. You’re eligible to join if you have the most common type of lupus, systemic lupus erythematosus (SLE) and are:

18 years or older at the time of enrollmentAble to consentNot pregnantAble to attend required study visits

Patient registries: CDC-funded research

A patient registry is a collection of information about people with a specific health condition or diagnosis. The Centers for Disease Control and Prevention (CDC) is currently funding five regional lupus registries across the United States.

These registries are:

Emory University (Georgia)Georgians Organized Against Lupus (GOAL) Mayo Clinic (Minnesota)Lupus Midwest Network (LUMEN)New York UniversityHarnessing Epidemiology to Advance Lupus Treatment and Health (HEALTH)University of California, San FranciscoCalifornia Lupus Epidemiology Study (CLUES)University of UtahImproving Pediatric Lupus Care and Outcomes through the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Lupus Registry

The goal of these registries is to help increase understanding of who gets lupus and how living with the disease affects them. These registries also help improve understanding of the ways health disparities affect people with lupus.

Health disparities are differences in health that are linked to bigger issues of unequal resources and social, economic or environmental disadvantages. These differences in health outcomes include life expectancy, health status, and rates of preventable disease and death in a population.

Health disparities are linked to factors such as race, gender, geography, income and access to healthcare. For example: Lupus affects people of all races and ethnicities, but the disease is three times more common in Black women than white women — and they’re more likely to have severe disease.

Experts aren’t sure why Black people are hit so much harder by lupus, but they think genetics, hormones and environmental issues may all play a part.

Finding hope through research

Lupus is a complex disease with a wide variety of symptoms that affects many parts of the body. While this makes it tricky to treat, it also creates many opportunities for research.

Whether you’re participating in a clinic or are in front of your computer, you may be able to contribute to the development of new treatments for lupus. In addition to checking out the resources mentioned above, talk to your healthcare provider about clinical trials or other types of research that may help you — and everyone else living with lupus.