RAY® Lupus Registry | Midwest
Research Accelerated by You (RAY®) is the Lupus Foundation of America’s online lupus registry where you can share your unique experiences living with lupus. Help deepen the understanding of lupus and accelerate the development of treatments for people living with lupus just like you.
Have you ever wondered why lupus affects you the way it does or why there aren’t treatments tailored to your specific symptoms? The answer starts with research. To develop new and better treatments and improve care, it is essential that people living with lupus are represented in research efforts like RAY® (Research Accelerated by You).
RAY® is the Lupus Foundation of America’s secure, online registry where people living with lupus (or parents/caregivers of children with lupus) can share their experience with lupus. When you share your story through RAY, it is 100% confidential while helping drive new research breakthroughs and improve care for everyone living with lupus - including you.
Lupus research moves forward when the voices of people living with lupus are at the center. When you share your experience living with lupus through RAY® - including your challenges and milestones, you become a driving force in shaping solutions to lupus. Your participation in RAY® helps:
Be an active contributor to scientific research and speed the development of new treatments from your home
This is a complex disease, making your unique lupus experience and voice critical to improving lupus science
You can regularly interact with the platform, and update and compare your lupus experience with others
Getting started is simple.
If you have lupus, or you’re the parent/caregiver of a child with lupus, joining RAY® takes just a few steps. First, complete a quick consent and registration process. Then, fill out a detailed survey about your experience with lupus. This survey takes up to 45 minutes to complete, but don’t worry - you can save your progress and come back later to complete it.
RAY® is designed to fit into your life.
Living with lupus looks different for everyone. Your symptoms can shift and change over time. To help capture this part of the lupus journey, our team will send you a gentle email reminder every 6 months for you to share updates in RAY® about your experience living with lupus. Each update you provide adds to the bigger picture of lupus, helping researchers uncover patterns and create treatments that reflect the real lives of people like you.
Your privacy comes first.
We protect your information with the highest standards of security. Your personal data (like your name and contact details) will never be shared without your explicit consent. Information shared with researchers is de-identified data (made anonymous so that it cannot be traced back to you).
Since its launch, RAY® has become a powerful way for people living with lupus to move research forward. By sharing your experience with lupus, you’ve helped to create real change by shaping studies, improving diversity in research, and accelerating the search for better treatments. Together, here’s what we’ve accomplished so far:
RAY® is now the largest registry of people living with lupus, uniting thousands of real stories about what it truly means to live with lupus.
RAY® participants have shared their diverse lupus experiences directly with researchers, government agencies (FDA, CDC), and industry partners to ensure new studies reflect what matters most.
In the past 3 years, participants in RAY® have been connected to and informed about dozens of clinical trials and other research opportunities.
Have Questions?
If you have questions or need support, please reach out to our team at RAYcoordinator@lupus.org.
RAY® Supporters
Thank you to Bristol Myers Squibb and GSK for your support of RAY®.
For Researchers
If you are a researcher interested in learning more about RAY® and/or ways to utilize RAY in your study, please contact us at RAYcoordinator@lupus.org.
Raise your voice today and share real insights on living with lupus.