The Lupus Foundation of America (LFA) is partnering with health informatics company Prometheus Research to develop a next-generation data platform, set to launch next year, to help advance lupus research.
LFA will use the platform to expand its Research.forME Lupus Registry, which was launched in 2017 as a digital data collection tool used by patients and caregivers to share their disease journey. The registry was also designed to inform future clinical research and treatment development.
The registry expansion will entail linking myriad data types and sources over time, including patient-reported outcomes, patient experiences, clinical and administrative information, and other real-world input. The platform will also enable participant interaction and engagement, as well as the ability to update and compare experiences and data, all in one place.
Overall, the technology is expected to facilitate access to high-quality data on key information, including patient perspectives. It will also give opportunities for industry and academia to collaborate on study data and clinical trial participation.
“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,” Stevan W. Gibson, LFA president and CEO, said in a press release.
“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,” Gibson added.
Including information on disease burden and patient outcome preferences will help research to focus on therapies that are meaningful to patients, according to the LFA. In addition, the ability to follow individuals over time will allow scientists to gather longitudinal data.
David Voccola, co-founder of Prometheus Research, said the LFA is taking “a forward-looking approach” in expanding its current registry.
“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,” he said. “Prometheus is thrilled that our technology and expertise will help the [LFA] to develop a dynamic data platform that will go above and beyond what is currently available in lupus.”
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