NEW YORK, Jan. 27, 2022 /PRNewswire/ -- The Lupus
Research Alliance (LRA) and its clinical affiliate Lupus
Therapeutics (LT) announced two major initiatives to address
underrepresentation of minorities in clinical trials and in the
scientific research profession: Project CHANGE by LT and
the Diversity in Lupus Research Program. The organization
has tackled these disparities for decades and now embarks on this
highly aggressive multi-pronged plan to achieve equity among people
with lupus and professionals in this field.
Project CHANGE by LT to Increase Lupus Clinical Trial
Participation among African Americans
Led by newly appointed Health Equity Director Ebony Scott, the Lupus Therapeutics
Project CHANGE by LT: Community-based
Health Action Network to Generate Trial
Participation and Eliminate Disparities focuses on a
community-based participatory research approach, health inequities
and disparities in clinical trials. Under her direction, this
program will develop multifaceted, comprehensive action plans that
increase meaningful, equitable, and supported clinical trial
awareness, participation, and retention (engagement) among African
Americans diagnosed with lupus in the U.S. A collaborative team in
three pilot locations will work with patients; hospitals;
healthcare providers; women's health groups; medical and nursing
associations; medical, community-based, faith-based, and grass root
organizations; as well as community leaders to tailor a specific
Action Plan that fits each of their community's specific and unique
needs.
"Because lupus affects each person differently, it is especially
important for the full range of patients living with lupus to
participate in research so that we can work towards new treatments
and ultimately a cure," noted Ms. Scott. "However, too often
treatments are not tested among the people who will need them most.
Project CHANGE by LT will increase representation by people of
color in lupus clinical research, particularly African Americans,
so potential new treatments can be developed that work for each
individual." Watch this video to hear more about the program
from Ms. Scott.
Lupus is an autoimmune disease that disproportionately affects
people of color in both prevalence and severity of disease.
In fact, lupus is the 5th and 6th leading cause of death among
African American and Hispanic females 15-24 and 25-54 respectively
– just behind cancer, heart disease and HIV.i Regarding
lupus-specific clinical trials, a recent study found that only 14%
of clinical trial participants included African Americans with
lupus.ii
LRA Launches Diversity in Lupus Research Program
Another disparity the LRA aims to alleviate is the lagging
representation of minorities in the scientific research field. In a
2018 report the National Science Foundation details that African
Americans, Pacific Islanders, Native Americans, and Hispanic
individuals make up just over 10% of the scientific workforce
despite accounting for more than 25% of the general
population.iii
To foster the development of talented underrepresented minority
early-career scientists, postdoctoral fellows, and research
trainees interested in lupus research, the LRA is launching a
comprehensive Diversity in Lupus Research Program. The three key
areas include:
- The Career Development Award to Promote Diversity in
Lupus Research provides up to $600,000 over four years to outstanding
early-career underrepresented minority scientists to establish an
independent research program aligned with LRA's strategic
priorities.
- The Postdoctoral Award to Promote Diversity in Lupus
Research provides promising underrepresented postdoctoral
research fellows with $170,000 over
two years to support projects and the generation of data needed to
become an independent lupus researcher.
- The Administrative Supplement to Promote Diversity in
Lupus Research supports, for up to two years, promising
underrepresented minority trainees working with LRA-funded
researchers or lupus investigators supported by the National
Institutes of Health or Department of Defense who have reviewed LRA
grant applications within the past three years.
LRA Chief Scientific Officer Dr. Teodora
Staeva noted, "In addition to financial support, the
Diversity in Lupus Research Program will provide access to quality
mentorship by leading lupus investigators, access to opportunities
and resources for scientific and professional development as well
as a supportive network of peer scientists, creating a close
professional community."
Building on Partnerships with Well-Respected Groups
These new programs build upon the recommendations of the Lupus
Multi-Cultural Engagement Partnership formed by the LRA and the
National Minority Quality Forum to address the causes and potential
solutions for the lack of inclusion in clinical trials of
populations at greatest risk for lupus. A Meeting report,
Addressing the Challenges of Clinical Research Participation
Among Populations Disproportionately Impacted by
Lupus presents many short- and long-terms
strategies, some of which LRA has already undertaken and others in
progress. The program is part of a multifaceted approach that
included the pivotal Lupus Patient-Focused Drug Development (PFDD)
Meeting hosted by the LRA, Lupus and Allied Diseases Association
and the Lupus Foundation of America which produced a comprehensive
report bringing 2,000+ diverse patient perspectives to the U.S.
Food and Drug Administration drug review process on what people
with lupus need from treatments. The LRA and LT continue to
advocate with the FDA on behalf of the lupus community, providing
feedback on patient concerns in addition to researching better ways
to measure and evaluate the effectiveness and safety of potential
new drugs.
Ensuring that the diversity of people with lupus is well
represented in clinical research was the objective of a recently
completed pilot study, Patient Advocates for Lupus Studies (PALS),
a peer support program in which individuals living with lupus were
trained to provide others with early education about clinical
trials. The goal of the program was to improve clinical trial
awareness, knowledge, and enrollment among people living with
lupus, and study results will be available this year. LRA and
LT also has worked with a wide range of groups such as Black Nurses
Rock, Balm in Gilead, National Kidney Foundation, as well as
clinical trial patient recruitment groups Antidote and Center for
Information and Study on Clinical Research Participation (CISCRP)
to make sure the full range of groups are knowledgeable about lupus
and equipped to self-advocate for clinical trial opportunities.
"We were among the first to identify significant racial
disparities in lupus care among underrepresented minority
populations and have worked with the U.S. Office of Minority
Health, U.S. Office of Women's Health and the Surgeon's General to
conceptualize The Lupus Initiative run by the American College of
Rheumatology and educate healthcare providers to improve diagnosis,
prompt treatment and encourage racially diverse participation in
clinical studies," commented LRA President and CEO Kenneth M. Farber. "Ensuring that minorities are
well-represented in clinical trials is a major priority for us.
Building on this strong foundation, our work continues with renewed
focus to achieve greater diversity among professionals researching
lupus and engaging patients in clinical trials."
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 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 Lupus Therapeutics
Lupus Therapeutics, an
affiliate of the Lupus Research Alliance, aims to accelerate drug
discovery and diagnostic innovation for all patients living with
lupus. Lupus Therapeutics engages with biotechnology and
pharmaceutical industry, as well as other investigators, to bring
clinical trials to real people living with lupus. The organization
aims to place the patient voice and community stakeholders at the
center of strategic planning with the most creative clinicians and
scientists in the world.
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i Yen, E. Y. and Singh, R. R. (2018),
Brief Report: Lupus—An Unrecognized Leading Cause of Death in Young
Females: A Population–Based Study Using Nationwide Death
Certificates, 2000–2015. Arthritis Rheumatol, 70: 1251-1255.
doi:10.1002/art.40512.
ii Falussuni, et al. 2018. The Representation of Gender
and Race/Ethnic Groups in Randomized Clinical Trials of Individuals
with Systemic Lupus Erythematosus.
iii National Science Foundation, National Center for
Science and Engineering Statistics, SESTAT (1993–2013), and the
National Survey of College Graduates (NSCG) (2015),
See: https://www.nsf.gov/statistics/2018/nsb20181/report/sections/science-and-engineering-labor-force/women-andminorities-in-the-s-e-workforce
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