NEW YORK, December 19, 2017 — The Lupus Research Alliance and the National Minority Quality Forum launched the Lupus Multi-Cultural Engagement Partnership at the recent inaugural meeting in New York City which was attended by 30 national experts and key opinion leaders.
The Lupus Multi-Cultural Engagement Partnership (Lupus MCEP) is an ambitious response to an urgent global problem: More than 120 clinical studies are underway to test potential new treatments for lupus, and more than 35,000 participants are needed to provide the U.S. Food and Drug Administration (FDA) with the data needed to evaluate the safety and efficacy of these treatments for people with lupus. But based on current projections, enrollment may not be enough to conduct these studies effectively, particularly among African American, Hispanic/Latina and Asian populations — populations at greatest risk for developing lupus.
Systemic lupus erythematosus (lupus or SLE) is a chronic autoimmune disease in which the immune system attacks rather than protects the body’s own tissues and organs. Research to test and develop new treatments is sorely needed to improve care and reduce potentially serious complications. But due to many factors including the difficulty of enrolling enough patients in clinical trials for reliable results, only one new treatment has been approved by the FDA in over 50 years.
Participants in the inaugural Lupus MCEP meeting identified key obstacles to patient recruitment that include: reluctance of physicians to present clinical research as a treatment option, logistical challenges, lack of perceived benefit, and fear that current symptoms will worsen. A full report will inform development of new strategies that can help increase enrollment of traditionally under-represented populations in lupus clinical research.
The organizations represented at the Lupus MCEP inaugural meeting were: Academy for Radiology & Biomedical Imaging Research; American College of Rheumatology; Arthritis Foundation; Association of Black Cardiologists; Black Women’s Health Imperative; Columbia University Medical Center; Drexel University College of Medicine; Emory University School of Medicine; Health Equity Leadership and Exchange Network (HELEN); Hospital for Special Surgery; Lupus Clinical Investigators Network (LuCIN); Lupus Research Alliance Multi-Cultural Outreach Task Force; Medical University of South Carolina; Morehouse School of Medicine; National Black Nurses Association; National Hispanic Medical Association; National Kidney Foundation; National Medical Association; The Balm in Gilead, Inc.; The Kelly Fund for Lupus, Inc.; Tufts Center for the Study of Drug Development; and WomenHeart.
The Lupus Research Alliance, a 501(c)(3) tax-exempt organization, is transforming the lives of people affected with lupus by financing the most innovative lupus research in the world. The National Minority Quality Forum is a 501(c)(3) not-for-profit, non-partisan, independent research and education organization that is dedicated to improving the quality of health care available for America’s increasingly biodiverse general population.
The two-day meeting was sponsored by Bristol-Myers Squibb, EMD Serono, GSK, and Mallinckrodt Pharmaceuticals.
For additional information about the Lupus Multi-Cultural Engagement Partnership, please contact Diane Gross (dgross@lupusresearch.org), or Gretchen C. Wartman (gwartman@nmqf.org).
