The aim of this 1-year award is to advance equity in lupus clinical trials by identifying, synthesizing, and disseminating innovative approaches and best practices to advance participant diversity in lupus clinical trials.
The project is entitled Utilizing a Lupus Clinical Trials Network to Advance Diversity and Representation in Clinical Trials: Perspectives, Preferences, and Unmet Needs of Patients, Providers, and Stakeholder Agencies. The research team will leverage novel data sources to advance evidence for enrollment of underrepresented populations in lupus clinical trials within the Lupus Clinical Investigators Network (LuCIN), which is the largest lupus clinical trials network in North America. Dr. Sheikh serves as Vice-Chair of this network. The project will also increase understanding of diverse perspectives of key stakeholders to identify barriers, facilitators, and tangible solutions to improving diversity and representation in lupus clinical trials.
Dr. Tessa Englund, Research Associate on Dr. Sheikh’s team at the UNC Thurston Arthritis Research Center (TARC) serves as co-investigator and project manager, and Shruti Saxena Beem, CCRC, is the research coordinator. Other TARC members on this project include Dr. Becki Cleveland and Dr. Alfredo Rivadeneira.
In addition, Drs. Vimal Derebail, Keisha Gibson, and Susan Hogan (Nephrology), who are key members along with Dr. Sheikh of UNC’s collaborative research group CHAPEL (Chapel Hill Alliance Promoting Excellence in Lupus), are co-investigators on this grant. Also at UNC, Dr. Jill Fisher (Social Medicine & Bioethics) and Dr. Donna Culton (Dermatology) are co-investigators who bring their expertise to the project. This collaborative effort also includes Dr. Titilola Falasinnu from Stanford University and Nicole Wanty from KDH Research & Communication.
Organizational partners and stakeholders involved in the project include the Lupus Research Alliance, Lupus Therapeutics/the Lupus Clinical Investigators Network (LuCIN), the American College of Rheumatology, the Lupus Foundation of America, the Connected Health Applications and Interventions (CHAI) core at UNC, and the UNC TARC Lupus Patient Stakeholder Advisory Board.