New data platform expected to aid research on curing lupus
The Lupus Foundation of America is developing a next-generation data platform to advance its research capabilities.
The organization is working with Prometheus Research, a health informatics company, to create scalable registry databases to address current and future growth needs within the lupus research field.
Lupus is a chronic autoimmune disease that can damage any part of the body, according to the foundation. In lupus, something goes wrong with the immune system, which is part of the body that fights off viruses, bacteria and germs.
The platform will be able to collect patient data such as outcomes and patient experiences, as well as clinical and administrative data, and patients will be able to continually update and compare their lupus experience in one centralized location.
“Our new platform will be able to capture the widely diverse experiences of people with lupus, from the onset of their symptoms to their treatment regimens,” says Stevan Gibson, president and CEO. This platform will shape what ‘real-world evidence’ is for the lupus field, accelerate research and improve disease outcomes.”
The platform further will support industry and academic entities working with the foundation to enable researchers to collect longitudinal data, which will help them follow individuals over time.
The inclusion of burden of disease data and patient outcome preferences also will ensure studies focus on the right questions and development of treatments that are important to patient, Gibson says.
The Lupus Foundation of America expects the platform to launch in 2020.