Lupus Foundation of America Launches Next-Generation, Patient-Powered Data Platform to Accelerate and Advance Lupus Research
WASHINGTON, Oct. 27, 2020 /PRNewswire/ -- Today, the Lupus Foundation of America announced the launch of RAY: Research Accelerated by You, a new lupus data platform where people with lupus and caregivers will share information about their lupus experience to help researchers accelerate the development of new treatments and improve disease outcomes. RAY builds upon more than 40 years of the Lupus Foundation of America's experience in research and engaging people with lupus, and will ensure a bright future for lupus research.
RAY uses flexible and scalable technology to collect patient-reported data focused on an individual's lupus experience, and has the ability to link with other data types and sources, including clinical and administrative data, and other real-world data over time. Data captured from the different experiences among people with lupus will shape what "real-world evidence" is for the lupus research field and help to address needs in both healthcare and drug development.
"The progress we're seeing in lupus research is extremely exciting, and the drug development pipeline for lupus has never been more robust. During this critical time in lupus research, RAY will give every person with lupus the opportunity to contribute their voice and unique experiences, helping to accelerate breakthroughs and future discoveries," shared Stevan W. Gibson, president and CEO, Lupus Foundation of America. "This platform will directly help researchers incorporate patient-powered data in every step of the lupus research process to enhance clinical trials and ultimately develop treatments that can improve disease outcomes."
Participants will be able to engage with interactive components on the platform and continually update their lupus experience so researchers can analyze long-term, de-identified data to investigate health patterns and trends over time. Some key features of the platform for people with lupus include:
- Data collection tools including surveys to capture patient reported information and experiences;
- The ability to use RAY as a tool at doctor's visits to discuss medication use and symptoms tracked over time, data trends, research opportunities and more;
- Access to the most up-to-date research studies and clinical trial opportunities that may interest them, and;
- The ability to see how their experiences compare to others living with lupus through graphs and charts.
The new platform will also make it easier and more efficient for researchers to access reliable and real-time data that is ready for analysis. Ensuring high quality data means that data can be used faster to identify gaps across the lupus care and treatment continuum.
"Being a part of lupus research has been important to me since the beginning of my journey with the disease," shared Christy Fath, lupus warrior and member of the RAY Steering Committee. "The Lupus Foundation of America's new data platform, RAY, is not only making it easier for me to potentially be a part of research opportunities and trials, it will also ensure that my experience and my voice is being heard and used to move lupus research forward today and in the future."
Learn more about RAY and how to participate at Lupus.org/ray.
About Lupus
Lupus is an unpredictable and misunderstood autoimmune disease that ravages different parts of the body. It is difficult to diagnose, hard to live with and a challenge to treat. Lupus is a cruel mystery because it is hidden from view and undefined, has a range of symptoms, strikes without warning, and has no known cause and no known cure. Its health effects can range from a skin rash to a heart attack. Lupus is debilitating and destructive and can be fatal, yet research on lupus remains underfunded relative to diseases of similar scope and devastation.
About the Lupus Foundation of America
The Lupus Foundation of America is the national force devoted to solving the mystery of lupus, one of the world's cruelest, most unpredictable and devastating diseases, while giving caring support to those who suffer from its brutal impact. Through a comprehensive program of research, education, and advocacy, we lead the fight to improve the quality of life for all people affected by lupus. Learn more about the Lupus Foundation of America at lupus.org.
Contact:
Mike Donnelly
[email protected]
(202) 349-1162
SOURCE Lupus Foundation of America
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