RAY: Research Accelerated by You | Pennsylvania Delaware Valley
No one understands lupus better than those living with it. Share your experience now and help brighten the future of lupus research.
What is RAY?
RAY: Research Accelerated by You is a lupus data platform where people with lupus and caregivers share information about their lupus experience to help researchers accelerate the development of new treatments and improve disease outcomes. You can be a ray of hope to ensure a bright future for lupus research by sharing your lupus experience.
How does it work?
RAY collects self-reported data from people with lupus on an ongoing basis and stores it in one centralized location. The platform is easy to use and your data comes from an online set of questions we ask you about your lupus experience. Your information stays 100% confidential. Through the platform, your anonymous data can be shared with researchers to increase the understanding of lupus and help drug developers enhance clinical trials, accelerating the potential for new therapies for people like you.
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
Use RAY as a tool at doctor visits to discuss medication use and symptoms tracked over time
Learn about new research studies, including clinical trials you can participate in that fit your interests
RAY does not share any personal information – your data will be safe, de-identified and anonymous if shared with researchers
Who Can Participate?
If you have lupus, or you’re a parent of a child with lupus or a caregiver, you can join RAY now!
Who Has Participated in RAY?
Take a look at this infographic snapshot of the average lupus experience among the thousands of lupus warriors in RAY: Research Accelerated by You. It includes statistics for the race, gender, geographical location, types of lupus, age, medications and more. View the infographic image or download a PDF.
How Do I Participate?
After completing a simple consent and registration process, you will need to complete a more detailed survey on the platform that can take up to 45 minutes to finish or be broken up at your convenience by saving your progress and returning later.
It’s also important that you continue to update your lupus information a few times throughout the year on RAY so researchers can analyze long-term data to investigate health patterns and trends over time. Each new update you provide or study opportunity you participate in can help us answer more questions about lupus. The platform provides notifications to let you know or remind you when additional information about your lupus is needed.
If I have questions about RAY, who can I talk to?
Please contact the RAY platform coordinator at registrycoordinator@lupus.org with any questions.
For Researchers
If you’re a researcher interested in accessing patient data from RAY, please contact our research coordinator at registrycoordinator@lupus.org.
RAY Supporters
Thank you to GSK and Horizon Therapeutics for your support of RAY.