New Centralized Model to Include Hundreds of Research Sites Across North America
Today, Lupus Therapeutics, the clinical affiliate of the Lupus Research Alliance, announced the expansion of its proven peer-to-peer clinical research education program – Patient Advocates for Lupus Studies (PALS) – making it available to hundreds of individuals living with lupus across North America. The expansion builds on the program’s success to date and aims to continue increasing awareness, participation, and representation in lupus clinical trials.
Lupus is a complex, chronic autoimmune condition affecting millions of people worldwide – disproportionately among Black, Latinx, Indigenous, Asian, and Pacific Islander people. Yet participation in clinical trials among these groups remains significantly lower. According to previous data from Stanford University, white patients make up 33% of systemic lupus erythematosus cases but represent 51% of participants in clinical trials, while Black individuals make up 43% of cases but comprise only 14% of trial participants.
The PALS program is the first and only program to address this gap in lupus by connecting individuals interested in clinical research with patient advocates who participated in lupus trials and are trained to support them throughout the clinical trial process. Launched in 2019 and co-designed with people living with lupus, the PALS program has shown to increase knowledge and interest in clinical trials according to published results of its pilot study. To date, the program has reached more than 100 people with support from six biopharmaceutical companies. With this launch, the program will support three clinical trials.
“The lupus community urgently needs more personalized, effective treatments, but progress depends on representative clinical trial participation,” Caroline Donovan, Senior Director of Patient Engagement & Education at Lupus Therapeutics, said. “The PALS model helps bridge the gap between curiosity and enrollment by pairing education with human connection – giving people the support they need to consider research as part of their day-to-day care.”
Over the past five years, the PALS program has operated at a subset of trial sites and patients within the Lupus Clinical Investigators Network (LuCIN), which comprises more than 60 of the most prestigious research medical centers throughout North America, and is overseen by Lupus Therapeutics.
With this expansion, the two core components of the program are now available to over 100 research sites in North America:
“Before talking with a patient advocate, I didn’t know what participating in a clinical trial might entail,” Kendra Latigue, a participant in the PALS early education program, said. “My PAL listened to me, supported me, and made me feel like I had a partner right beside me. She inspired me to become an advocate myself and continue seeking trials where my experience might help us move lupus research forward.”
The PALS program will continue to be measured, monitored, and maintained by the Lupus Therapeutics team to ensure quality, consistency, and ongoing impact. Results will be reported on the program, as available.
To learn more about the PALs program, visit here. For sites interested in incorporating the program into your clinical trial, reach out here.
About Lupus
Lupus is a chronic, complex autoimmune disease that affects millions of people worldwide. In lupus, the immune system, meant to defend against infections, produces autoantibodies that mistake the body’s own cells as foreign, causing other immune cells to attack organs such as the kidneys, brain, heart, lungs, and skin, as well as blood and joints. Ninety percent of people with lupus are women, most often diagnosed between the ages of 15-45. Black, Latinx, Indigenous, Asian and Pacific Islander people are disproportionately affected by lupus.
About the Lupus Research Alliance
The Lupus Research Alliance is the largest non-governmental, non-profit funder of lupus research worldwide. The organization aims to transform treatment by funding the most innovative lupus research, fostering scientific talent, and driving discovery toward better diagnostics, improved treatments and, ultimately, a cure for lupus. Because the Lupus Research Alliance’s Board of Directors funds all administrative and fundraising costs, 100% of all donations goes to support lupus research programs.
For more information or to donate to lupus research, visit the LRA at LupusResearch.org and on social media at: X, Facebook, LinkedIn, and Instagram.
About Lupus Therapeutics
Lupus Therapeutics, the clinical affiliate of the Lupus Research Alliance, aims to accelerate the development of curative treatments for all patients living with lupus. Lupus Therapeutics collaborates with premier research institutions, biopharmaceutical partners, and those living with lupus through the unprecedented Lupus Clinical Investigators Network (LuCIN) to drive rapid and meaningful progress in treatment development. The organization elevates the patient voice, engages community stakeholders, and strives for representation of the lupus community in the clinical research process with the most innovative and renowned experts throughout North America.
Visit LupusTherapeutics.org for more information.
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Media Contact:
Rebekah Barnes
RBarnes@lupusresearch.org
