Making Clinical Trials More Efficient and Effective
We increase efficiencies in lupus research by streamlining and modernizing clinical trials.
- Patient resource for finding and learning about clinical trials: The Center for Clinical Trials Education (LFA-CCTE™) is the main resource for people with lupus and their families who want to learn about clinical trials. The Center includes a comprehensive search tool for clinical trials, considerations for participating in a clinical trial, and a guide to clinical research terms.
- Data sharing to identify trends and gain new insights: Established in 2009, the Lupus Foundation of America Collective Data Analysis Initiative (LFA CDAI™) is a unique collaboration among multiple companies with the shared goal to improve our collective ability to deliver new treatments. LFA CDAI combines data from pharmaceutical and biotechnology–sponsored lupus clinical studies from across the world. Biostatisticians analyze the data to identify trends and gain new insights. The results will help the lupus research community conduct stronger clinical trials that produce more meaningful data, which will accelerate the development of new therapies.
- First-of-its-kind set of tools to monitor lupus disease activity: The LFA-REAL™ system is a two part system, based on a series of simple questions and observations, to determine a treatment’s impact on the patient’s health and daily life. Qualitative research including focus groups and in-depth interviews were completed in 6 cities to lay out the conceptual framework for the patient tool. A preliminary study was done to determine how well a draft version of the clinician tool compares to other lupus disease activity measures. The results were very positive and published online at Lupus Science & Medicine™. A second study was completed where a revised version of the clinician tool was tested in 4 different sites. The results are very promising and have been presented at several recent international scientific meetings.
- Global standardized lupus disease instrument training: We created the Professional Online Instrument Training Program (LFA-POINT™), a worldwide professional online instrument-training program that is now used by more than 3,000 clinical investigators in more than 50 countries. It provides training for uniformly assessing the effectiveness of experimental lupus therapies in global clinical trials and greatly increases the probability of the successful development of new lupus treatments. This tool improves consistency in assessments so that we ca get an accurate assessment of the efficacy of the study treatment.