(MENAFN- PR Newswire)
WASHINGTON, Nov. 14, 2024 /PRNewswire/ --
The Lupus Foundation of America (LFA), along with numerous researchers funded by the Foundation, will present novel lupus discoveries as part of the American College of Rheumatology Convergence 2024 meeting in Washington D.C. from November 14-19, 2024.
"The pathway towards greater understanding of lupus and breakthroughs toward new treatments is clearer than ever, and the Lupus Foundation of America continues to contribute and propel advancements in these areas," said Joy Buie, PhD, MSCR, RN, Vice President of Research, Lupus Foundation of America. "This year, we are presenting new insights around persistent social determinants of health (SDOH) and solutions to address SDOHs to reduce disparities in health outcomes from our Lupus Addressing Health Inequities in Minorities (Lupus AIM) program, as well as sharing powerful learnings garnered through Lupus Foundation of America's Research Accelerated by You (RAY®) patient registry and our Strategies to Embrace Living with Lupus Fearlessly (SELF) online self-management program."
Addressing Social Determinants of Health to Improve Health Outcomes in Lupus
In Abstract #0353: Identifying Solutions to Address Racial and Ethnic Health Disparities in Lupus: A Consensus-Based Approach , the LFA and LFA-funded researchers identified and prioritized 12 high-impact solutions to health disparities in four categories among racial and ethnic minoritized individuals living with lupus. High-priority solutions include supporting people living with lupus in applying and getting approval for disability and increasing screening for lupus risk factors in high-risk communities . The researchers conclude that aligning the community on top priorities and potential solutions is a critical step in advancing health equity and improving lupus outcomes.
Abstract #2159: Reaching Those in Need: Understanding the Reach of a Digital Program for Lupus Self-Management Education: User Demographics and Social Needs , analyzed information on demographics and social needs gathered from users of the LFA's Strategies to Embrace Living with Lupus Fearlessly (SELF) online self-management program. SELF users who completed the program's intake assessment reported social needs that included food insecurity, bill pay insecurity, housing insecurity, distance/transportation barriers, and childcare barriers. The researchers conclude that there is an opportunity for focused dissemination of SELF to reach a younger and more racially and ethnically representative population of people with lupus.
Understanding Patient-Level Barriers to Clinical Trial Success: Metrics, Measures and Participation
Abstract #0217: Understanding Treatment Goals and Factors Influencing Decisions About Clinical Trial Participation in Lupus Patients from Diverse Backgrounds , examines treatment goals and factors influencing decisions about trial participation in patients with lupus from diverse racial backgrounds. The study centers on five focus areas, patient-centered goals, barriers to trial participation, positive influences on participation, concerns over placebo, and flexible trial designs.
Abstract #1952: Interest in Clinical Trial Participation Among People with Lupus: Results from the Research Accelerated by You (RAY) Registry , explored factors affecting interest in clinical trial participation. Of people with lupus with no prior clinical trial participation, those with no interest in trial participation were aged 50+ and had a longer time since diagnosis compared to those expressing interest in trials. Those aged 50+ were more disinterested in trials due to side effect concerns versus those with trial interest. A longer time since diagnosis (6+ years) was independently associated with a greater lack of interest in trials for other reasons. Findings suggest that understanding and addressing patient reservations about trial participation could improve enrollment at a time of plentiful trials and insufficient numbers of participants.
Speaker Sessions on Cultural Humility and Implementation Science
In an invited session on Cultural Humility for the Pediatric Rheumatologist , the LFA's Dr. Buie will moderate a discussion that will explore the concept of cultural humility, diverse challenges amongst pediatric patients with rheumatic diseases, how factors related to access to care and resources affect clinical outcomes in pediatric patients of different ethnicities, and strategies for integrating cultural humility into every patient encounter to ensure more inclusive and effective care.
Additionally, in a session on Implementation Science and Lupus: Effectively Bridging the Gap from Research to Practice , moderated by the LFA's Melissa French, speakers will provide an introduction to implementation science oriented around lupus as a case study. The session will focus on implementation science frameworks, as well as the value of integrating mixed-methods designs and behavior change theories into program development (using the Lupus Foundation of America's SELF program as a case study).
Supporting Early Career Scientists
Studies from recent LFA Gary S. Gilkeson Career Development Award recipients to be presented during the annual meeting include:
Dr. Jessica English's presentation of Abstract #0440: Pregnancy Outcome Disparities Among Women with Systemic Lupus Erythematosus
Dr. Tala El Tal's report Abstract #1274: Comparing Performance-Based Measures and Self-Reported Questionnaires for Assessment of Executive Function in Youth with Childhood-Onset Systemic Lupus Erythematosus
Dr. Jordan Roberts' discussion of the Abstract #1270: Association of Disease-Modifying Anti-Rheumatic Drug Selection with Hospitalized Infection in Youth with Childhood-Onset Systemic Lupus Erythematosus
Dr. Abhimanyu Amarani's review on Abstract #0812: A Human Gut Pathobiont Drives Platelet Activation with Microparticle Release and NETosis During Lupus Nephritis Flares
Dr. Rashmi Dhital's presentation Abstract #0807: Evaluating Adverse Pregnancy Outcomes in Systemic Lupus Erythematosus (SLE) and SLE Subgroups: Additional Risks Associated with Cardiovascular Events
Studies from recent LFA Pediatric Lupus Research Grant recipients to be presented during the annual meeting include:
Dr. Joyce Chang's findings from a study on Abstract #1794: Biobehavioral Basis and Outcomes of Cognitive Dysfunction in Childhood Systemic Lupus Erythematosus
Dr. Linda Hiraki's discussion on Abstract #1282: Investigating the Genetics of Depression and Anxiety in Children and Adolescents with and without Systemic Lupus Erythematosus
About the Lupus Foundation of America
The Lupus Foundation of America is the national force devoted to solving the mystery of lupus , one of the world's cruelest, most unpredictable and devastating diseases, while giving caring support to those who suffer from its brutal impact. Through a comprehensive program of research, education, and advocacy, we lead the fight to improve the quality of life for all people affected by lupus. Learn more about the Lupus Foundation of America at lupus .
Contact:
Mike Donnelly
[email protected]
(202) 349-1162
SOURCE Lupus Foundation of America, Inc.
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