Patient Advocates for Lupus Studies (PALS) Program
The goals of the PALS program are to:
- Increase awareness of the need for, and potential risks and benefits of lupus clinical trials among a more diverse population of patients
- Increase participation in clinical research, that ideally will lead to treatments that improve health outcomes and quality of life for people living with lupus
- Increase diversity in clinical trials so study results reflect safety and effectiveness in the diverse population affected by lupus
PALs, all of whom have been diagnosed with lupus and have previously participated in clinical studies, receive formal training in lupus terminology and knowledge, the clinical research process, and the importance of representative patient participation in clinical trials so they can address patient questions about participating in clinical studies.
Pilot Study Demonstrates Success
Piloted at five medical centers, the PALS program trained 11 individuals living with lupus who had participated in clinical research to serve as peer educators to those who had never been in a trial.
Published results of the PALS pilot study show that at one year after completing the PALS program, participants’ knowledge about clinical trials had increased, and nearly half had taken some further action with regard to joining a trial. Over one third (37%) spoke with their healthcare provider about lupus trials, 17% had been screened for their eligibility to join a trial, and 10% had enrolled in a study.
PALS Expanding the Program Reach
Having proven successful, the PALS program is expanding in 2024 with 15 additional PALS, who can provide people with lupus the tools needed to make informed decisions about joining a clinical trial. Currently four sites are offering the PALS program, and plans are underway for added sites.
LuCIN Sites Currently Offering PALS Early Education
First-in-Lupus Clinical Trial Support
In January of 2024, Lupus Therapeutics announced another innovative PALS expansion with the introduction of a first-in-lupus “Trial Buddy” component made possible by a partnership with Bristol Myers Squibb.
The Trial Buddy addition provides extra support to people with lupus while they are involved in the Phase 3 POETYK SLE trials to evaluate how personal interaction can impact study retention and engagement. These Phase 3 trials are evaluating the investigational treatment, deucravacitinib as a potential treatment for active systemic lupus erythematosus. In preparation to support trial participants, the PALS Trial Buddies receive additional training in clinical trials and the POETYK SLE trials specifically.
LuCIN Sites Piloting Trial Buddy PALS Expansion Program
Thank you to our generous sponsors who help make the PALS Program possible.