How Lupus ABC Is Changing Lupus Research

In a recent interview with The Educated Patient, Veronica Vargas Lupo, a member of the Lupus Voices Council at the Lupus Research Alliance and lupus advocate, discussed the growing role of patient-reported outcomes (PROs) in lupus research. This conversation is tied to work presented at this year’s American College of Rheumatology Convergence by the Lupus Accelerating Breakthroughs Consortium (Lupus ABC), a public-private partnership focused on accelerating lupus drug development while ensuring that patients’ perspectives are fully integrated.

Vargas Lupo, a patient herself, emphasized that the ultimate measure of a drug’s success isn’t just improvements in lab results or clinical markers — it’s whether patients feel better and are able to function in their daily lives. While biological measures, such as blood counts or organ function, are important, they do not fully capture how lupus affects day-to-day life. For many patients, the most impactful symptoms are fatigue, joint pain and brain fog, which are often overlooked in traditional clinical trials. For example, fatigue from lupus is not the same as ordinary tiredness — it can prevent someone from completing daily tasks, engaging with family or maintaining work responsibilities. Brain fog can affect memory, focus and cognitive function, creating challenges that are invisible to standard clinical assessments.

Lupus ABC is addressing these gaps by involving patients at every stage of the research process. Through the Lupus Voices Council, patients help identify which symptoms matter most and ensure that the outcomes measured in trials reflect real-life experiences. Vargas Lupo explained that this approach requires ongoing dialogue between researchers and patients, balancing what is meaningful to the patient with what is scientifically measurable. Importantly, she highlighted that symptoms previously considered hard to measure, like brain fog, are now being actively discussed and investigated in research settings.

Including patient input in clinical trials can improve study design, ensure more relevant outcomes and increase the chances that new treatments address the aspects of lupus that truly impact quality of life. Vargas Lupo also expressed optimism about the global implications of this work, emphasizing that lupus treatments should reflect patient experiences worldwide, not just in the U.S. She stressed the need for patient voices in shaping which PROs are included, how they are measured, and how their data are used to support regulatory approval and guide drug development.

Ultimately, this focus on PROs represents a cultural shift in lupus research. By giving patients a central role in trials, researchers, regulators and industry partners can work together to develop therapies that improve both biological outcomes and daily life, making lupus research more patient-centered and impactful than ever before.