The Lupus Landmark Study (LLS) is a new, groundbreaking initiative designed to accelerate the development of personalized treatments for people living with lupus. Led by the Lupus Research Alliance and our clinical research affiliate Lupus Therapeutics, the LLS is the largest observational study of its kind in lupus. The LLS will follow and collect longitudinal data from 3,500 patients over time, enabling major breakthroughs in the treatment of lupus. People with lupus have played a key role in the design of the LLS and will continue to be at the core of this effort through their participation in the study. Their engagement will generate the data needed to drive patient-centric treatments as well as allow participants greater visibility into their own personal health data.
The key to progress
Lupus not only affects each person differently, but it can change over time. People of all ages and from all walks of life are living with lupus, but it is especially prevalent among women and communities of color.
To develop breakthroughs, researchers require data that reflect the diversity of the lupus community and how each person’s lupus manifests differently. However, there is limited access to standardized, high-quality biological samples and natural history data. This is an incredibly complex autoimmune disease, and collecting and accessing those data sets is the key to progress.
Who can participate in the Lupus Landmark Study?
People with systemic lupus erythematosus (SLE), 18 years or older at the time of enrollment, able to consent, not pregnant and able to attend required study visits are eligible to participate.
The LLS will recruit in several cities across North America and will be rolled out to future locations throughout 2024. The study is currently recruiting patients at the following medical centers affiliated with Lupus Therapeutics and its Lupus Clinical Investigators Network:
- – The University of North Carolina at Chapel Hill
- – University of Alabama at Birmingham
- – University of Chicago
- – University of Massachusetts Chan Medical School
- – Wallace Rheumatic Studies Center
- – Emory University
For additional information on eligibility criteria, please email LupusNexus@lupusresearch.org.
How does the Lupus Landmark Study work?
Talk to Your Doctor to See if You Are Eligible
You will receive detailed information about how to participate. We value your time and the impact you will make on lupus research. You will receive a modest stipend for taking part in this study.
Attend Study Doctor Visits
During visits with a study doctor, we will collect medical information and biological samples, such as blood, urine, stool and saliva. The good news is that many of the tests and samples being collected are already part of the routine care you get from your medical provider.
Complete Online Surveys
You will also be asked to participate in online patient surveys throughout the course of the study. These surveys will help us collect valuable information about your progress and treatment.
Follow Your Study Progress
This is a community effort, and we promise to keep you and our community informed. You will be able to access your own data, view your progress throughout the study, and share the information with your personal healthcare team. All of the information we collect is private, and all your personal information is secure. In fact, researchers who receive your samples and data will only receive de-identified information, which means that all information that can be used to identify you is removed. You can opt out at any time during the study.
The Lupus Landmark Study is a bold new initiative that promises to unlock major breakthroughs in our understanding and treatment of lupus. And we are just getting started.
For more information, contact us:
