The Patient Advocates for Lupus Studies, or “PALS,” program was created by the Lupus Research Alliance and its affiliate Lupus Therapeutics (LT) to improve clinical trial awareness, knowledge, and enrollment among people living with lupus, with a specific focus on reaching diverse populations. The program is part of our commitment to identify and accelerate the development of new lupus treatments through the Lupus Clinical Investigators Network (LuCIN) and to engage people with lupus in various stages of clinical research. Individuals living with lupus who ideally have personal experience with clinical trials will receive training to serve as peer advocates for clinical trials at selected LuCIN centers.
The PALS program is a peer-to-peer clinical trials education program, through which education about lupus clinical trials will be delivered to patients by trained patient advocates, or “PALS,” who ideally have personal experience with lupus clinical trials. These individuals will receive formal training in basic lupus terminology, the clinical research process, and the importance of representative patient participation in clinical trials in order to address patient concerns related to clinical trials. The PALS will provide an additional, trial-agnostic resource for individuals with lupus who are considering enrolling in or want to learn more about clinical trials.
Through peer-to-peer support with an individual who understands the challenges of living with lupus and has had experience with clinical trials, the PALS program will provide clinical trial education with the goal of creating awareness about clinical trials for lupus, changing perceptions of clinical trials, and improving knowledge about the importance of clinical trials.