The Importance of Clinical Trials

Jane Doe, LRAN Member

Introduction:

• Who am I?
• What has been my lupus experience been like?
• Why am I here?

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Lupus Research Action Network

• What is LRAN?

The Lupus Research Action Network (LRAN) is a group of Individuals living with lupus who are committed and empowered to advance lupus research through advocacy, awareness and education.

• What is the goal of LRAN?

Increase knowledge about and participation in lupus research, including clinical trials, through a trusted peer network, including a focus to increase engagement in lupus research among racial and ethnic minority groups.

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Importance of Clinical Trials

• Lupus is ranked in the top 10 leading causes of death for Black/African American and Hispanic/Latino women ages 15 to 44 years
• Black people are estimated to make up to 43% of lupus cases, they are only 14% of participants in lupus clinical trials
• We need to increase the participation of the Black/African American lupus community in clinical trials to determine whether new treatments are safe and effective for them

What Does it Mean to Participate in a Trial? 

• Participation is voluntary
• Study staff (doctors, nurses, research/study coordinators) are required to follow strict procedures to protect your safety and rights
• Participating in research helps other lupus warriors by contributing to medical research 

How do I get involved in Lupus Research?

• Talk to your doctor
• Check out the National Resource Center on Lupus
• Enroll in Research Accelerated by You (RAY)

RAY^® - A First Step to Increase Participation in Lupus Trials

• It’s easy to do!
• Can be done from the comfort of your own home!
• Learn more about research and engagement opportunities that will help advance lupus drug development 
• Clinical research and clinical trial opportunities
• Focus group/listening session opportunities
• FDA
• Pharmaceutical companies

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QUESTIONS?