February 22, 2024
By NMQF Staff
For Immediate Release
19 March 2019 | WASHINGTON, DC
Lupus Research Alliance and National Minority Quality Forum Release Recommendations to Advance New Lupus Treatments by Increasing Diversity in Clinical Trial Participation
The Lupus Research Alliance (LRA) and the National Minority Quality Forum (NMQF) recently released the insightful report, “Addressing the Challenges of Clinical Research Participation Among Populations Disproportionately Impacted by Lupus.” The report presents findings and actionable recommendations ranging in scope that can be implemented by any individual or group seeking to increase participation in lupus clinical trials among diverse populations.
Lupus is a chronic, complex autoimmune disease that affects millions of people worldwide. More than 90% of people with lupus are women; lupus most often strikes during the childbearing years of 15-45. African Americans, Latinx, 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.
The two organizations came together in 2017 to form the Lupus Multi-Cultural Engagement Partnership (Lupus MCEP), aimed at identifying the challenges and potential solutions to participation in clinical trials, particularly among minority populations at greatest risk for lupus. The collaboration was sparked by several factors including data showing that people of different races and ethnicities respond differently to medications as well as the growing diversity of the U.S. population overall.
The inaugural meeting of the Lupus MCEP convened leaders involved in equalizing healthcare for minority populations who work within or outside of the lupus community — scientists, clinicians, people with lupus, health educators and advocates for minority health, as well as representatives from pharmaceutical companies.
The resulting report includes suggestions for how to inform particularly underserved patients about clinical trials and how potential barriers to participation may be overcome. The project also aims to increase the potential for success by reinforcing collaborations among traditional members of the lupus community, as well as fostering new partnerships and empowering others to take action.
A Problem with Participation
“Lupus predominantly affects women, and disproportionately affects women of color — African American, Hispanic, Asian and Native American – groups that are historically underserved by our healthcare system and underrepresented in clinical research studies,” noted National Minority Quality Forum President and CEO Gary A. Puckrein, PhD. “In comparison with Caucasians, these populations are also more likely to experience multiple co-existing health conditions and much higher mortality rates.”
“Overcoming the many challenges to increasing diverse participation in clinical trials cannot be accomplished by just one or two organizations,” pointed out Kenneth M. Farber, President and CEO of the Lupus Research Alliance. “Clinical research that generates statistically significant results for all population groups affected by lupus is critical not only for these patients but also to ensure the integrity and relevance of academic research. We hope this report serves as a call to action for individuals as well as organizations to do what they can to implement the recommendations presented.”
Recommended Initiatives Underway
Building on the momentum generated by the December 2017 meeting, the LRA and NMQF have been working on several of the initiatives presented in the report. For example, the two groups are developing the Lupus Index as a first-of-its-kind resource for data that will help identify where people with lupus are receiving treatment so outreach and education among patients and healthcare providers can be better targeted. The LRA also developed a Lupus Community Education Toolkit with input from the NMQF and support of Mallinckrodt Pharmaceuticals that provides turnkey materials healthcare professionals and lay persons can use to conduct lupus community awareness education for a variety of audiences. In addition, the LRA is collaborating with The Balm in Gilead, Delta Sigma Theta, Inc. and other organizations to expand awareness of the clinical trial process among African Americans.
The LRA and NMQF recognize the sponsorship of Bristol-Myers Squibb, EMD Serono, GSK, and Mallinckrodt Pharmaceuticals for their support of the meeting and resulting report.
About the Lupus Research Alliance
The Lupus Research Alliance aims to transform treatment while advancing toward a cure by funding the most innovative lupus research in the world. The organization’s stringent peer review grant process fosters diverse scientific talent who are driving discovery toward better diagnostics, improved treatments and ultimately a cure for lupus. Because the Lupus Research Alliance’s Board of Directors fund all administrative and fundraising costs, 100% of all donations goes to support lupus research programs.
About the National Minority Quality Forum
The National Minority Quality Forum (NMQF) is a 501(c)(3) not-for-profit, non-partisan, independent research and education organization. NMQF’s vision is a health services research, delivery and financing system that provides quality and effective health services to the biodiverse American general population of the 21st century. NMQF helps assure that national and local quality improvement initiatives are informed by scientific evidence and place a priority on the quality of care and patient outcomes in all populations.
For additional information, contact:
Diane Gross, LRA National Director of Advocacy and Programs
Gretchen C. Wartman, NMQF Vice President for Policy and Program