CARE Lupus: Community Action For Resilience Against
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What If We Could Prevent Lupus Before It Starts?
A Research Study for Family Members of People Living with Lupus
If you have a parent, sibling, or child diagnosed with lupus — but you do not have lupus yourself — you may be eligible to participate in CARE Lupus.
CARE Lupus: Community Action for Resilience Aganist Lupus
Lupus has long been treated after symptoms begin - often after irreversible damage has already occurred.
CARE Lupus is working to change that.
CARE Lupus is a groundbreaking research study designed specifically for people who do not have lupus but have a close family member who does. The study aims to help researchers better understand who may be at increased risk — so one day we can prevent the disease before it begins.
Led by Dr. Karen Costenbader at Brigham and Women’s Hospital, CARE Lupus is funded by the Lupus Foundation of America as part of its Predict & Prevent Lupus research program.
Why This Study Matters
In diseases like heart disease and cancer, early risk identification saves lives. Lupus has never had a large-scale effort focused on prevention - until now.
Lupus often affects young women in the prime of life, and diagnosis frequently happens after serious damage has already begun. Having a close family member with lupus increases the likelihood of developing the disease. However, it’s important to note:
- Most people with a family history of lupus will not develop lupus.
- About 20% of people with lupus have a parent or sibling with the condition.
Researchers believe that a combination of genetic, environmental, and lifestyle factors contributes to lupus risk. CARE Lupus is designed to better understand those patterns — and shift lupus research from reacting to disease → to anticipating and preventing it.
Who Can Participate?
The CARE Lupus research team is currently recruiting for this study and looking for individuals who meet the following criteria:
Women ages 18–49 who:
- Do NOT have lupus
- Were assigned female sex at birth
- Have a parent, sibling, or child diagnosed with lupus
If you have lupus, you can help by sharing this opportunity with eligible family members.
Your family’s participation could help shape the future of prevention.
What Participation Involves
Participation is voluntary and can be done from your home.
Eligible participants will be asked to:
- Complete short, online surveys about health, family history, and lifestyle
- Share feedback over time to help researchers understand patterns of risk
There are:
- No medications
- No treatments
- No clinical procedures (except for volunteering for blood collection)
Just your voice and your experience.
How This Study Advances Lupus Research
The CARE Lupus study will build one of the largest national groups of people at increased risk for lupus due to family connection.
- Researchers will use this information to:
- Identify early warning signs
- Understand environmental and lifestyle influences
- Design future prevention strategies
- Ensure prevention reflects real-world needs
This is a critical step toward a future where prevention becomes part of lupus care - not just treatment.
Why This Matters to the Lupus Community
CARE Lupus represents a hopeful shift toward a future where:
- Lupus is identified earlier
- Severe disease and organ damage may be reduced or avoided
- Prevention becomes part of lupus care—not just treatment
Questions?
If you have questions, you can reach out to:
- Emily Oakes: eoakes@bwh.harvard.edu
- Nori Cabello: ncabello@bwh.harvard.edu
Help Shape a Future Without Lupus
Take the survey to see if you are eligible to participate.
CARE Lupus is funded by the Lupus Foundation of America and supports its commitment to Predict & Prevent Lupus research, including initiatives like Research Accelerated by You (RAY).