Lupus Therapeutics Enhances Peer-to-Peer Program for Lupus Clinical Trials

Expansion of the PALS Program

Lupus Therapeutics, a clinical affiliate of the Lupus Research Alliance, has officially expanded its peer-to-peer clinical research initiative, known as the Patient Advocates for Lupus Studies (PALS). The program is now accessible to a significantly larger group of individuals living with lupus throughout North America.

Originally launched in 2019, the PALS program was designed to enhance awareness, participation, and representation in lupus clinical trials, particularly among communities that are disproportionately affected by this chronic autoimmune condition. Despite lupus impacting millions globally, participation rates in clinical trials remain alarmingly low for underrepresented groups. For instance, while Black individuals comprise 43% of systemic lupus erythematosus cases, they make up only 14% of clinical trial participants.

The essential goal of the PALS program is to establish a connection between those interested in research and trained patient advocates who have experience in lupus trials. These advocates provide valuable support, helping patients navigate their journey through clinical trials with more informed choices. Funding from six biopharmaceutical companies has allowed the program to reach over 100 participants and support three clinical trials.

“More effective and personalized treatments for lupus depend heavily on representative participation in clinical trials,” said Caroline Donovan, Senior Director of Patient Engagement at Lupus Therapeutics. The PALS model effectively bridges the gap by providing educational resources coupled with human connection, empowering patients to consider clinical research as part of their treatment options.

Over the last five years, the PALS initiative has primarily operated within a select network of trial sites and patients in the Lupus Clinical Investigators Network (LuCIN). This network consists of over 60 prestigious medical research centers across North America, which has been instrumental in the ongoing development and execution of the program. With this latest expansion, PALS is now available at more than 100 research sites.

Two vital components of the program include early education and trial-specific support. The early education segment features patient advocates offering general guidance on what participation in clinical trials entails, while trial-specific support helps potential participants through the specifics of enrolling in particular clinical trials.

Kendra Latigue, a participant in the early education segment, shared her positive experience: “Before talking with a patient advocate, I had no idea about what participating in a clinical trial might involve. My advocate listened, supported me, and made me feel like I had someone walking alongside me. She motivated me to become an advocate myself and explore trials where my experiences could help advance lupus research.”

As the PALS program progresses, Lupus Therapeutics will continue to monitor and evaluate its impact to maintain quality and consistency. Results will be reported as available, ensuring transparency and continuous improvement.

Understanding Lupus

Lupus is a chronic autoimmune disease that affects individuals by causing the immune system to mistakenly target and attack the body's own cells, posing risks to vital organs such as the kidneys, brain, and skin. It disproportionately affects women, particularly those between the ages of 15 to 45, and minorities, including Black, Latinx, Indigenous, Asian, and Pacific Islander populations.

Looking Forward

With the support from Lupus Therapeutics, the PALS program is set to not only raise awareness and participation in clinical trials but also to reshape the landscape of lupus research for future generations. More information on the PALS program can be found here. For those interested in incorporating the program into their clinical trials, the organization encourages outreach.

For further information regarding lupus research initiatives and ways to support, visit the Lupus Research Alliance's website at LupusResearch.org.