AARDA Approved for a $97,498 Engagement Award for Stakeholder Convenings

DETROIT – The American Autoimmune Related Diseases Association (AARDA) has been approved for a $97,498 funding award through the Eugene Washington PCORI Engagement Awards program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The funds will support an online conference and educational forum to demonstrate a new treatment decision tool that provides individualized, culturally tailored, computerized assistance for treatment decision-making for Lupus patients, with a specific focus on populations with limited health literacy, including racial and ethnic minorities. This first-of-a-kind tool was designed by Dr. Jasvinder Singh and a team at the University of Alabama who, with PCORI’s support, produced this valuable resource for both those seeking treatment and clinicians seeking a more effective method of communication beyond the standard pamphlet.

“We are thrilled to share this valuable resource with those that will most benefit,” said Laura Simpson, Chief Operating Officer of AARDA. “Dr. Singh’s tool provides those living with Lupus with customized information to help them choose the best course of treatment. This can be transformational for many patients and supports our educational pillar of equipping patients and caregivers with resources for every stage of their autoimmune journey.”

Empowering Women with Lupus Nephritis to Share in Their Treatment Decisions is part of a portfolio of projects that PCORI has funded to help develop a community of patients and other stakeholders equipped to participate as partners in comparative clinical effectiveness research (CER) and disseminate PCORI-funded study results.  Through the Engagement Award Program, PCORI is creating an expansive network of individuals, communities, and organizations to participate, share, and use patient-centered CER. 

According to Greg Martin, PCORI’s Acting Chief Engagement and Dissemination Officer, “This conference was selected for Engagement Award funding because it will bring together patients and other stakeholders to explore critical issues related to CER and communicate PCORI-funded research findings to key stakeholders. We look forward to working with AARDA throughout the course of their yearlong project.” 

Empowering Women with Lupus Nephritis to Share In Their Treatment Decisions and the other projects approved for funding by the PCORI Engagement Award Program were selected through a highly competitive review process in which applications were assessed for their ability to meet PCORI’s engagement goals and objectives, as well as program criteria. For more information about PCORI’s funding to support engagement efforts, visit their website.  

PCORI is an independent, nonprofit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.