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Patients

Lupus and lupus clinical trial information, resources and tools for African Americans

Why it is important for you, as an African American, to consider clinical trials?

Lupus is a devastating, life-altering disease that may leave you feeling hopeless and afraid. Even the mention of participating in a clinical trial can be scary. Learning more about the disease, asking questions about clinical trials and getting support from your faith community—all of this helps you make informed decisions.  You are empowering yourself with the knowledge needed to make best decision about whether or not taking part in a clinical trial is right for you.

Participation in clinical trials—specifically lupus trials—is important because:

  • Lupus is not only more common in African Americans, it is typically more serious.
  • African Americans participate at lower rates in clinical trials than other groups.
  • African Americans may respond differently to certain treatments than other racial groups. That’s why it is critical that African Americans volunteer for clinical trials—to know these drugs will work for you.

The materials below were designed to provide you with basic honest information about lupus and clinical trials so that you can take an active role in your own health through your faith community.

 

“The beauty of God is He speaks to you in so many different ways. For me, it was through the people who cared for me. I learned to partner with doctors. I learned to ask questions of physicians so that I could be an active component in my care. I think that’s one of things that when we participate in clinical trials, we empower ourselves. It’s an empowering way to make a difference.”
—Wendy Rodgers, IMPACT for Lupus Action Partnership Lupus Patient Representative

Information about lupus and clinical trials
You’ve Got the Power!

Download (PDF) of general information by the National Medical Association about African Americans & clinical trials.

Patient Bill of Rights

Guide for patients: Learn about your rights before and during a clinical trial. Download (PDF).

African Americans and Clinical Research

Download this guide (PDF) to learn about research, why you are needed in clinical trials and how you are protected.

Frequently Asked Questions about Lupus

Guide (PDF) to the different types of lupus, diagnosis and treatments.

Frequently Asked Questions about Lupus Clinical Trials

Download this guide (PDF) to learn about the different types of lupus clinical trials, participation, benefits, risks and safety.

You Can Make a Difference: Lupus Clinical Trials and African Americans

Information about lupus clinical trials and what to expect if you are interested in participating. Download (PDF).

What is Happening to My Body? Lupus and African Americans

Important information about what lupus is and how it can affect you. Download (PDF).

Other Helpful Resources

Download this informational guide (PDF) that contains resources for lupus, clinical trials, and how to access them.