You live with
lupus. now
lead the way.

Real stories. Real research.
Real impact.

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For me, participating in clinical trials meant being heard and telling my story.
— Alexandra

What is a Clinical Study?

A clinical study is health research in which doctors and scientists work with patients to learn better ways to prevent, treat, and manage diseases. When you join a study, you become an important part of the team working to improve health for you and for others.

Why Join a Clinical Study?

  • You may be able to explore new options that could help you and support research to improve treatments for all lupus patients
  • Receive extra care and attention from doctors and nurses in the study
  • Learn more about your condition and how treatments can help
  • When people from different backgrounds participate, researchers get a clearer picture of how lupus affects everyone
1.5M
people in the US are
living with Lupus1
200k
people in the US are living with SLE2
1 lupus.org/understanding-lupus
2 pubmed.ncbi.nlm.nih.gov/33474834/

Lupus is common, but clinical trial participation is rare.

While thousands take part in clinical trials each year, participation doesn’t reflect the diversity of those affected – especially among Black/African American and Hispanic communities. Because lupus affects everyone differently, each participant helps researchers better understand the disease and how treatments work across all communities.

What Should You Expect?

How Are Patients Cared For?

  • The study is explained in easy-to-understand language
  • There are review boards that approve how trials are conducted to make sure that safety and fairness are a priority
  • You can ask questions, say no, or leave the study without losing your regular care
  • Many studies provide support for patients (transportation, lodging, childcare, etc.), and some studies compensate participants
1 in 10
leading causes of death for Black & Hispanic women
(15–44) is lupus3
40%
of lupus patients are Black and Hispanic Women4
3 lupus.org/understanding-lupus
4 pubmed.ncbi.nlm.nih.gov/33474834/

Who Joins Clinical Trials?

Lupus is common, but clinical trial participation is rare.

Lupus affects people of all backgrounds. But when it comes to clinical trials, participation does not reflect this reality. In particular, Black/African American and Hispanic patients are not joining trials as often, which makes it harder to understand how Lupus affects these communities. By encouraging more people from these communities to take part, research can give a clearer picture of Lupus for everyone.
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Through clinical trials, I’ve learned that I’m not alone and participating is something I can do to be a part of the solution. — cindy

How Have Clinical Trials Changed
to Protect Participants?

In the past, there were serious cases of mistreatment that created distrust, like the three examples below, but today strict rules and oversight prioritize community safety.

Tuskegee Syphilis Study

‍(1932–72)

Puerto Rico Birth Control Trials

‍ (1950s)

Willowbrook Hepatitis Study
‍(1956–70)


We have dedicated teams, called Institutional Review Boards (IRBs), which are committees made up of doctors, scientists, and community members. They review and approve the ethical standards of all clinical trials to protect participants and ensure that safety and fairness are a top priority.

Questions To Discuss With Your Doctor

Here are some questions that may help you start a discussion with your doctor.

  • Should I consider a clinical study?
  • Where can I learn more about clinical studies for SLE patients?
  • Will a clinical trial affect my current lupus treatment?
  • What are the possible risks and side effects of participating?
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