From Lab to Life: Resources for Participating in Lupus Research

Research plays a vital role in providing evidence needed to improve the prevention, diagnosis and treatment of diseases. Reliable data and research helps health care professionals make informed decisions and deliver evidence-based care to their patients.

Clinical trials are an important part of this process. Researchers use clinical trials to study potential treatments and determine their safety for people living with lupus. Information gathered through clinical trials helps inform future treatment options, which leads to improved care.

Research also provides a platform for people to be heard. Participating in surveys and clinical studies help researchers understand the realities of living with lupus. It also helps illustrate the lived experience for those who recently have been diagnosed with lupus and may be feeling anxious or uncertain about what comes next.

At the Lupus Foundation of America, we are committed to helping people affected by lupus engage with research. Whether you are interested in participating in a study, learning more about clinical trials or helping shape the future of lupus care, the following tools can help you explore opportunities to get involved and stay informed. 

RAY® (Research Accelerated by You) Lupus Registry

RAY® is The Lupus Foundation of America's online lupus registry that allows people living with lupus to share information about their unique experiences with the disease. Through a baseline survey and brief periodic follow up questionnaires, participants share valuable information that helps researchers better understand lupus, identify patient needs and accelerate future research efforts. Participation in the registry also provides opportunities for participants to learn about the latest lupus research studies and clinical trials near them.

The Center for Clinical Trials Education

The Center for Clinical Trials Education provides a central place for learning about and exploring lupus research opportunities. It helps individuals and their loved ones find active clinical trials, understand what participation involves and access educational materials about the research process. This resource is designed to make it easier for people with lupus to navigate clinical research and make informed choices about participation.

Lupus Clinical Trial Finder

The Lupus Clinical Trial Finder is a personalized search tool created through a partnership between the Lupus Foundation of America and Carebox. It helps individuals identify clinical trials that may match their specific health profile and needs. By simplifying the search process and highlighting actively recruiting studies, the tool makes it easier for people with lupus to explore potential research opportunities and take the next step toward participation.

Frequently Asked Questions About Participating in Clinical Trials

Choosing to participate in a clinical trial or study is an important personal decision, and you should always talk with your doctor and loved ones about deciding to join a study. To help you feel confident and informed, this educational resource can help answer common questions about joining clinical trials, including what the process involves, how safety is protected and what participants can expect. It covers key topics such as eligibility, potential risks and benefits, and participant rights.

Lupus research moves forward when the voices of people with lupus are at the center. Visit our Participate in Lupus Research page to learn more about these and other ways to help advance lupus research.