New York, NY. June 29. Lupus Therapeutics, the clinical research affiliate of the Lupus Research Alliance, today announced the launch of three pilot research initiatives for Project CHANGE, a community-driven approach to address systemic challenges contributing to the underrepresentation of people of color, particularly Black people, in lupus clinical trials. The sites selected to participate in the pilot include Emory University in Atlanta, Vanderbilt University in Nashville, and the University of Pennsylvania in Philadelphia, all of which are part of Lupus Therapeutics Lupus Clinical Investigators Network (LuCIN).
Lupus impacts people of color two to three times as often as white patients, and often with greater severity of disease; yet Black individuals account for just 14% of clinical trial participants.(1) Because lupus affects each person differently, it is important to reflect this full range of diversity in clinical trials to ensure that everyone in the lupus community has access to the best therapies for their individual needs.
“The potential for great impact in areas with high prevalence of lupus among the local Black community was among the top criteria for site selection for Project CHANGE,” noted Claire Finney, Health Equity Project Lead at Lupus Therapeutics. “By amplifying the voices of those traditionally not engaged in the clinical research process, Project CHANGE will address the critical need for greater diverse representation in lupus clinical trials and give Black lupus warriors greater influence within their community’s healthcare system. We are proud to have reached this pivotal milestone and excited as the project moves into the second stage of implementation where we can make transformative change.”
Project CHANGE Steering Committee Reflects Lupus Community’s Diversity*
Lupus Therapeutics acquired input from many resources including academic researchers, health disparity experts, faith-based organizations, and people with lupus to enlist a multi-disciplinary, diverse Steering Committee to lead the initiative. The Committee is chaired by Edith Williams, PhD, Founding Director, Office of Health Equity Research and Dean’s Associate Professor of Health Equity Research at University of Rochester and Salathiel DeLoach, Founder and CEO of DeLoach Lupus Foundation Savannah Ga, Inc. Together, the Steering Committee developed extensive objective and measurable criteria to use in selecting three representative geographic locations and academic sites to pilot the program.
“The eventual goal of Project CHANGE is to have more people engaged in research, more people who are ultimately impacted positively by the research that is being conducted by improvements in clinical care and practice,” Ms. Williams emphasized. “When certain people are experiencing a greater burden than others, I feel it’s our duty to do something about that. Everyone should have the opportunity to have the best health possible, as we would hope for ourselves and our loved ones.”
Ms. Deloach commented, “Communities of lower wealth and communities of color often go unnoticed. Project CHANGE is going to pull the blanket off that inequity. It has been intentional about making sure that the researchers are present, that the patients are present, that caregivers are present, that doctors are present. There are few other programs that exist that have all of those different key players present. Project CHANGE is going to make a real difference.”
Lupus Research Collaboratives to Engage Local Communities
Each of the pilot sites are now forming Lupus Research Collaboratives (LRC) to work with a wide range of community stakeholders including: people with lupus, hospitals, community-based healthcare providers, medical associations, and grassroots community groups and leaders. Their goals will be to design action plans that address their community’s specific and unique barriers to raising awareness and accessing lupus clinical trials among Black people with lupus. Lupus Therapeutics, along with the Project CHANGE steering committee, will provide extensive support and mentorship to each of the three LRCs. In partnership with research and evaluation experts at KDH Research and Communication and Decision Information Resources, Inc., Project CHANGE will track and evaluate outcomes, challenges, and successes of each LRC so this process can be replicated in other communities in the future.
Project CHANGE is made possible by the generous support of the following pharmaceutical companies committed to achieving health equity in clinical research: AstraZeneca, Bristol Myers Squibb, Genentech, GSK plc, Janssen, Eli Lilly and Company, and Royalty Pharma.
Click here for more information about Project CHANGE.
Lupus is a chronic, complex autoimmune disease that affects millions of people worldwide. More than 90 percent of people with lupus are women; lupus most often strikes during the childbearing years of 15-45. Black/African Americans, Hispanic Americans, Asians and Native Americans are two to three times at greater risk than Caucasians. In lupus, the immune system, which is designed to protect against infection, creates antibodies that can attack any part of the body including the kidneys, brain, heart, lungs, blood, skin, and joints.
About Lupus Therapeutics
Lupus Therapeutics, the clinical research affiliate of the Lupus Research Alliance, aims to accelerate the development of curative treatments for all patients living with lupus. Lupus Therapeutics collaborates with academic institutions, biotechnology and pharmaceutical partners through the unprecedented Lupus Clinical Investigators Network (LuCIN) to drive rapid and meaningful progress in the treatment of lupus patients. The organization elevates the patient voice, engages community stakeholders, and strives for representation of the diverse lupus community in the clinical research process with the most innovative and renowned experts throughout North America. Visit lupustherapeutics.org for more information.
About the Lupus Research Alliance
The Lupus Research Alliance is the largest non-governmental, non-profit funder of lupus research worldwide. The organization aims to transform treatment by funding the most innovative lupus research, fostering diverse scientific talent, and driving discovery toward better diagnostics, improved treatments and ultimately, cure for lupus. Because the Lupus Research Alliance’s Board of Directors funds all administrative and fundraising costs, 100% of all donations goes to support lupus research programs.
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Falasinnu T., Chaichian Y., Bass M.B., Simard J.F. The representation of gender and race/ethnic groups in randomized clinical trials of individuals with systemic lupus erythematosus. Curr. Rheumatol. Rep. 2018;20:20. doi: 10.1007/s11926-018-0728-2Media Contact:
*Project CHANGE Steering Committee Members
|Edith Williams, PhD||Founding Director, Office of Health Equity Research and Dean’s Associate Professor of Health Equity Research
|University of Rochester|
|Salathiel DeLoach||Founder & CEO||DeLoach Lupus Foundation Savannah Ga, Inc.|
|Carla Boutin Foster, MD||Associate Dean of Diversity & Research||SUNY Downstate Medical Center|
|Cary Goodman||Program and Development Consultant||Balm In Gilead|
|Dexter Cooper, MPH||Project Manager||KDH Research & Communications|
|J. Christopher Reed, JD||Policy, Advocacy, and Mobilization Program Manager; Council Member||SisterLove; Georgia Council on Lupus Education and Awareness|
|Jessica Williams, MD||Assistant Professor of Rheumatology||Emory University|
|Kim Quan||Executive Design Director||IDEO|
|Soledad Alfaro, MSEd||Chief Operating Officer||Surge Institute|
|Tom Anthony, MBA||Business Design Lead||IDEO|
|Joe Mauriello||Board Member||Lupus Research Alliance and Lupus Therapeutics|