Lupus Foundation of America Announces Development of Next Generation Data Platform to Advance Lupus Research
Built in Partnership with Prometheus Research, Data Platform Will Use Leading Technology to Support High Quality, Integrated Data
The Lupus Foundation of America is excited to announce the development of a next-generation data platform supporting the acceleration and advancement of lupus research. The data platform is built in partnership with Prometheus Research, a leading health informatics company with proven success developing flexible, scalable registry databases to answer current and future growth needs within the lupus research field.
With its new platform, the Lupus Foundation of America will expand upon its current registry and be able to continue collecting patient data but also link various data types and sources, including patient-reported outcomes, patient experiences, clinical and administrative data, and other real-world data over time. Participants will also be able to interact and engage with the platform, including the ability to continually update and compare their lupus experience and data in one centralized location.
Data quality will be at the forefront, using technology that makes it easier and more efficient to access reliable data, faster. This breadth and quality of data is critical in lupus research to address unmet needs in lupus-specific treatment development and improve the quality of life for people with lupus.
“Our new data platform will be able to capture the widely diverse experiences of people with lupus, from the onset of their symptoms to their treatment regimens,” said Stevan W. Gibson, president and CEO, Lupus Foundation of America. “We are excited to launch this effort in collaboration with Prometheus Research, industry leaders, researchers and academia, regulatory agencies, and most importantly, people with lupus. This platform will shape what ‘real-world evidence’ is for the lupus field, and help to accelerate research and improve disease outcomes.”
The platform will enable opportunities for industry and academic collaboration to enhance clinical trial participation and provide meaningful data for studies. Its inclusion of burden of disease data and patient outcome preferences will help ensure studies focus on the right questions and develop treatments with impacts that are important to patients. Additionally, the platform will enable researchers to collect longitudinal data by providing the ability to follow cohorts of individuals over time.
“We understand that lupus is an incredibly complex disease with a broad range of data that needs to be collected and analyzed in order to accelerate research. Prometheus is thrilled that our technology and expertise will help the Lupus Foundation of America to develop a dynamic data platform that will go above and beyond what is currently available in lupus, collecting high quality, longitudinal data on vital information—including the patient perspective,” commented David Voccola, co-founder of Prometheus Research. “The LFA is truly taking a forward-looking approach.”
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.
To learn more about Prometheus’ solutions for rare disease research, please visit our solutions page here.