Participating in the LRA’s Lupus Landmark Study was a “no-brainer” says Angelica Perez, a 37-year-old woman living with lupus since she was nine. “I had been taking part in clinical trials for years to potentially improve my own care while helping to advance new treatments overall.”
A patient of renowned Los Angeles lupus physician and researcher Dr. Daniel Wallace, Angelica explained that she figured ‘why not’ when he asked her to join the Landmark Study. “The Lupus Landmark Study is an observational study which means they just collect information and follow my care for a few years. I’m already doing all the lab work needed in my regular appointments. It’s important, though, to give researchers a volume of patient samples to better study lupus.”
Dr. Wallace noted, “Taking part in the Lupus Landmark Study gives people with lupus a chance to make a real difference and help others.”
Led by the Lupus Research Alliance and our clinical research affiliate Lupus Therapeutics, the Lupus Landmark Study (LLS) was recently introduced to enable major breakthroughs in our understanding of lupus and to accelerate the development of personalized treatments for people living with the disease. The Lupus Landmark Study is a key component of the Lupus Nexus, a state-of-the-art, patient-centric, collaborative research resource which aims to transform lupus research and drug development through unprecedented information exchange capabilities.
The LLS is the largest study of its kind in lupus, collecting much-needed data and biospecimens from 3,500 patients like Angelica.
Angelica explained how little effort is required to make such a big contribution: “I use a simple app on my phone that collects my medical information, blood pressure, blood work and other lab results. I don’t have to do anything extra. And I’m helping researchers like Dr. Wallace learn more about lupus.”
As she described, participants will complete an average of nine visits with a study doctor over five years, at which time they will be asked to fill out health questionnaires and provide biospecimens such as saliva, stool, blood, and urine. These clinical and research data will be collected and stored on the Lupus Nexus, a first of its kind registry, biorepository and data exchange platform that will be the leading resource for the research community. All data is securely stored and given a unique code, meaning all information is anonymous and confidential. Researchers will use this data to learn more about lupus and to help design other studies in the future that aim to provide better and more personalized treatments for people living with lupus.
The Lupus Landmark Study began enrolling participants in select academic medical centers in the Lupus Therapeutics Lupus Clinical Investigators Network (LuCIN) with an expanded roll-out planned in 2024. To find out more information about the Lupus Landmark Study, please contact the Lupus Nexus team at LupusNexus@lupusresearch.org.
Angelica advises talking to your doctor about this study and other lupus trials. “Trials are so important to understanding what it’s like to live with lupus. Current treatments work to an extent. But there’s still so much out there that isn’t being researched. Without clinical trials, we wouldn’t have therapies that can help better manage our lupus. We need more people to participate to make it better for you, for me, for everyone.”