The Patient Advocates for Lupus Studies (PALS) Program, funded by Lupus Therapeutics the clinical research affiliate of the Lupus Research Alliance, aimed at increasing the knowledge of, positive attitudes toward, and intentions among people with lupus to join a clinical trial. These results were recently published in The Open Rheumatology Journal, the official open-access journal of the American College of Rheumatology.
Individuals living with lupus who had participated in a clinical trial were trained as peer educators to connect with lupus patients who had never been in a clinical study. Findings show one year after completing the PALS program, participants’ knowledge about lupus clinical trials (LCTs) had significantly increased, and nearly half took some further action with regards 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.
Why Clinical Trial Participation is Important
Clinical trials of potential new lupus treatments are critical but have historically struggled to enroll participants who represent the diversity of all those impacted by the disease, particularly groups most affected. According to a published analysis from Stanford University, white patients constitute 33% of SLE cases but represent 51% of participants in clinical trials, while Black patients make up 43% of SLE cases but comprise only 14% of trial participants.
“We are excited to share the success of this pilot study as it provides evidence of a practical program that can be adapted and implemented to increase the participation of racially and ethnically diverse participants in lupus clinical trials,” commented Corresponding Author Saira Sheikh, MD. “As we look to the future, our focus is now on scalability and sustainability while our hope is that these opportunities can be available and impactful to our patients living with lupus, far and wide.”
Dr. Sheikh serves as the Linda Coley Sewell Distinguished Professor of Medicine in the Division of Rheumatology, Allergy, & Immunology, Director of the UNC Rheumatology Lupus Clinic, Director of the Clinical Trials Program at the UNC Thurston Arthritis Research Center, and Vice-Chair of the Lupus Therapeutics’ Lupus Clinical Investigators Network.
Source: Lupus Research Alliance. Read the full press release here.