Lupus Foundation of America Research Initiatives to be Presented at the 2022 American College of Rheumatology Annual Meeting
From findings on its online forum LupusConnect to multiple patient-centered and clinical studies it is supporting, LFA has much to share
WASHINGTON, Nov. 8, 2022 /PRNewswire/ -- The American College of Rheumatology Convergence 2022 meeting will be held in Philadelphia, PA from November 10-14, 2022. The Lupus Foundation of America (LFA) and investigators funded by the Foundation will share novel research findings, as well as program insights from its LupusConnect™ online community.
"Studies funded by the LFA have contributed to scientific breakthroughs in lupus treatment and care for the last 40 years and we're especially proud to present an abstract informed by our 24/7 online lupus support community called LupusConnect," said Joy Buie, PhD, MSCR, RN, Director of Research, Lupus Foundation of America. "The open platform serves as a forum for people with lupus and caregivers across the globe to talk about the disease, providing an opportunity to glean real-world insights that will help support people impacted by the disease."
The abstract, LupusConnect: A 24/7 Online Lupus Support Community, presents popular topics discussed by more than 18,000 community members with a self-reported connection to lupus. During the pandemic, community membership and engagement remained strong, underscoring a need for connection within the lupus community.
The top terms discussed across both US and non-US members were lupus, pain, and symptom(s). Rheumatology, blood, and disease were also among top subjects. Most of the community members were based in the US (85.5%). And of those participating in the online community, 58.4% were women and 5.2% were men – 36.4% did not specify a gender.
"A National Needs Assessment Survey previously conducted by the Lupus Foundation of America revealed that that the number one need of people with lupus and caregivers is social support and assistance coping with the disease," said Buie. "The LupusConnect study affirms the ongoing need for online support forums where people with lupus can interact from anywhere at any time and share information about disease-related topics. The study also reinforces our commitment to creating programs that meet the needs of the international lupus community."
Important and exciting new LFA-funded or supported research will also be presented during the upcoming ACR meeting, including information on an ongoing project involving Systemic Lupus Erythematosus International Collaborating Clinics (SLICC), the American College of Rheumatology and the LFA. The collaborative is working to help update the SLICC Damage Index (SDI) used to predict the damage accrual a person with lupus is likely to experience. The current phase of the project focuses on identifying specific measures that reflect organ damage in adult, young-adult, and pediatric populations living with lupus. With the help of lupus experts and patients, 220 unique measures have been identified for 14 organ systems and underscores the importance of tapping diverse stakeholder groups to create a more comprehensive and inclusive damage index.
As a patient-facing advocacy organization, the LFA has been working on the Treatment Response Measure for Systemic Lupus Erythematosus (TRM-SLE) project, providing guidance on the development of a new clinician-reported outcome measure for lupus clinical trials and ensuring the patient voice is incorporated. Dr. Kathryn Connelly, who co-leads the work, will present, Towards a Novel Clinician-Reported Outcome Measure for SLE-Outcomes of an International Consensus Process, and report on progress of the TRM-SLE project. The LFA's involvement with the project has centered around helping define domains for the measure and speaking to outcomes that are important to consider from the patient's perspective when determining whether a drug is an effective treatment for lupus.
Some of the studies from recent LFA Gary S. Gilkeson Career Development Award recipients to be presented during the annual meeting include, Dr. Dominique Kinnett-Hopkins' discussion of Social Cognitive Correlates of Accelerometer-measured and Self-reported Physical Activity in Persons with Systemic Lupus Erythematosus and application of intervention strategies that address exercise goal setting and self-perception of physical capabilities to improve overall physical activity in people with lupus; Dr. Andrea Fava's presentation of Change in Urinary Biomarkers at Three Months Predicts 1-year Treatment Response of Lupus Nephritis Better Than Proteinuria and immunological-based biomarkers to gauge renal activity; and Dr. Jordan Roberts' review of Real-World Effectiveness and Steroid Sparing Effect of Belimumab in Pediatric Lupus: A Single Center Retrospective Study analyzing efficacy of Benlysta for treatment in children.
In a Scientific Session, Dr. Jane Salmon will present Targeting Inflammation in Obstetric APS, addressing preliminary research findings of the LFA-funded IMPACT Study (IMprove Pregnancy in APS with Certolizumab Therapy). This study presentation will highlight the safety profile of certolizumab when used during pregnancy in women who have lupus anticoagulant present in the blood or have antiphospholipid syndrome.
Throughout the ACR Meeting, the LFA will tweet updates on innovative scientific initiatives and research studies presented as well as breaking news. Follow the LFA for evolving conference hot topics and research highlights at, LFA's Twitter feed.
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.org.
Contact:
Mike Donnelly
[email protected]
(202) 349-1162
SOURCE Lupus Foundation of America
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