On February 7 and 8 2024, KDHRC had the privilege of attending the National Association…
In May 2023, Lupus Therapeutics and Lupus Research Alliance held a two-day Lupus Clinical Investigators Network (LuCIN) Community Meeting in Charleston, South Carolina. The meeting was for stakeholders including researchers, pharmaceutical companies, community leaders, and people living with lupus to discuss the lupus landscape. Critical topics included current research for treating lupus symptoms, testimonials from people living with lupus about how the work Lupus Therapeutics and Lupus Research Alliance makes a difference, and challenges that patients with lupus and researchers face. The meeting provided the opportunity for attendees to exhibit their work, learn about lupus clinical trials, and network with lupus stakeholders.
While this LuCIN Community Meeting occurred in May, it oriented attendees to the latest lupus research and prepared them for the Lupus Therapeutics project work for the remainder of the year.
KDHRC staff Annie, Dexter, and Nikki are involved in evaluation and research components in two Lupus Therapeutics projects: Patient Advocates for Lupus Studies (PALS) and Project CHANGE, respectively.
- PALS is an education program where people living with lupus and have experienced clinical trials conduct tailored education sessions with minority lupus patients to increase their clinical trial knowledge and intention to participate in lupus clinical trials.
- Project CHANGE uses a community-based participatory research approach to understand and address the systemic challenges and inequities that racial/ethnic minority lupus patients encounter when accessing clinical trials.