2024 Predict and Prevent Lupus Research Grant Awardee

Karen H. Costenbader, MD, MPH

Affiliation: 

Brigham and Women’s Hospital, Harvard Medical School 

Project Title: 

Community Action for ResiliencE against Lupus (CARE-Lupus) 

About the Researcher: 

Karen Costenbader, MD, MPH, is a rheumatologist and translational epidemiologist, whose research has focused on translational and clinical studies and trials in systemic lupus erythematosus (lupus or SLE) and related autoimmune diseases. Her work has investigated risk factors and mechanisms in the development of these diseases and their long-term outcomes. Dr. Costenbader’s studies have made use of large cohorts, including the Nurses’ Health Study, the Women’s Health Study, the Black Women’s Health Study, the VITAL trial, Medicaid, and the U.S. Renal Data System, as well as the Mass General Brigham Biobank and the Brigham and Women’s Hospital Lupus Center population. She currently directs the Brigham and Women’s Hospital Lupus Program, staffed by ten SLE expert rheumatologists, with resources including a large BWH Lupus Registry and Biobank, and extensive clinical data and biologic specimens. She has experience with immunophenotyping biomarkers, including genomic, serologic, cytokine, chemokine and other soluble mediators. She is passionate about developing strategies to address those at high risk of lupus and testing interventions to prevent or abrogate this severe multisystem disease.  

CARE-Lupus Study Summary: 

Lupus is a serious autoimmune disease that affects multiple body systems. It strikes mainly women and is in the top 10 causes of death for young women who are Black or Hispanic in the U.S.. Having a family member with lupus, and a variety of environmental exposures, increase the risk of developing lupus in the future. We also know that lupus develops over time, making it possible to identify people at risk and hopefully prevent it, but this has not yet been proven. We have developed a lupus risk prediction model based on family history and known risk factors. In Community Action for Resilience against Lupus (CARE-Lupus), we will reach out through the Lupus Foundation of America’s unique Research Accelerated for You (RAY) U.S.-wide registry of people with lupus interested in research, and our Brigham and Women’s Hospital large lupus population.

We will consent, enroll, and collect information from their young female relatives, mainly sisters and daughters, ages 18-49. We will ask about family and medical histories, social, behavioral, and environmental exposures, and test collection of blood samples and medical records. We will focus on including women who self-identify as of African ancestry/Black or Hispanic/Latina, as they are most affected by lupus, and reducing the burden of lupus for these groups would be a huge breakthrough. We will interview people with lupus and their family members about the issues important to them in starting community-based screening for lupus and designing a lupus prevention trial, and we will develop training for future CARE-Lupus ambassadors in the community to spread the word about this important study. Working with people from a wide range of backgrounds and experiences, we will start the first nationwide community-based study of people at risk for lupus. Our goal is to launch a highly successful community-based lupus risk screening and prevention trial to test and prove strategies to prevent lupus.