Lupus Research Alliance Inc

The lupus research alliance (lra) has made significant strides in advancing its scientific mission through strategic planning, program expansion and operational improvements.in 2024, the lra successfully developed and implemented the first-year goals of its 20242028 research strategy. In alignment with the updated research strategy, lra launched several innovative, patient-centric research initiatives, including the translational bridge award, the targeted research program on engineered cell therapies, the renewed cycle of the common mechanisms in autoimmune diseases program, and the mechanistic clinical studies award. Additionally, the organization began developing a lupus biomarkers strategy and initiated the development of a comprehensive data strategy, scheduled for completion in 2025.lra's current grant programs, including the global team science award (gtsa), career development award, post doctoral award, and lupus innovation award --were expanded and optimized through active staff oversight and strategic collaborations. This included launching a request for applications in a collaborative program across the gtsa and continuing the administrative supplement training program.to raise the visibility of its research programs, lra submitted multiple abstracts to international scientific meetings, several were accepted and will be presented in 2025. The organization also hosted a successful and engaging annual investigator's and program specific meetings: forum for discovery, alliance of gtsa and other program-specific research meetings in november of 2024. Operational improvements included the selection and implementation of a new grant management system, the recruitment and onboarding of two staff scientists and a lupus abc administrator, and the strengthening of the research team through targeted team-building and professional development efforts. Lupus abc has been successfully established as a model public-private partnership in the regulatory space, demonstrating leadership and innovation in advancing lupus research and experienced substantial growth in membership during 2024. The initiative secured active participation from the fda's center for biologics evaluation and research, reinforcing its credibility and collaborative strength. A major milestone was the fda's acknowledgment of clasi 70 as a primary efficacy endpoint in cutaneous lupus clinical trials, marking a significant advancement in clinical outcome measurement. Additionally, lupus abc convened a dedicated patient-reported outcomes (pro) meeting to further integrate patient perspectives into research and regulatory strategies. Lupus nexus completed its infrastructure build and officially launched to both research and patient communities. It finalized foundational analysis plans, selected key vendors, and recruited 200 participants. Additionally, 10 new clinical sites were activated through lucin (see below), and a sustainable financial model with a defined membership fee structure was established. Lupus therapeutics, llc :the lra founded lupus therapeutics, llc (lt) as the clinical research affiliate of the lra in 2018. With this addition, the lra is the only organization leading lupus research across the continuum from accelerating basic discoveries in the lab through clinical evaluation of new therapies. Many of the basic research breakthroughs supported by the lra have helped unravel the complexities of lupus and enabled the development of potential treatments and diagnostics now in clinical studies. Lt is actively supporting several clinical studies for new therapies through the lupus clinical investigators network (lucin). Lt oversees lucin, a north america-based lupus clinical trials network of 60+ premier research medical centers. The lra provided over $2.6 million in grants in 2024 to continue funding top academic centers to foster robust, high quality clinical trial conduct with participation across north america.lt also offers expertise combined with that of 250+ lucin providers and the lra to support academic, nonprofit and biotech and pharmaceutical organizations to plan, initiate and manage clinical research. This occurs through diverse advisory services and direct clinical operations support. An annual lucin community meeting is held to bring together all of the partners in clinical research to highlight recent advancements, bolster understanding, address current challenges in clinical research and encourage collaboration for successful development of new treatment approaches.in addition, lt has expanded the first peer-to-peer clinical trials education program, patient advocates for lupus studies or pals to include trial buddy support during participation in clinical trials. Pals aims to improve clinical research awareness, knowledge and enrollment, with a specific focus on making sure populations at greatest risk for lupus are well represented in studies. Lt also supports other patient engagement activities such as patient advisory boards, patient visits and patient protocol review committees to ensure that individuals impacted by lupus have a voice in the treatment development process. Finally, lt efforts support various education offerings for providers and patients, and community-based outreach to ensure representative participation of the entire lupus community in clinical research.

The lupus research alliance's advocacy efforts focus on educating congress about lupus and urging congress and the administration to provide the funds and support needed to advance lupus research that can lead to better treatments and, ultimately, a cure. Efforts also include ways to ensure increased diversity in clinical trials and reducing barriers to enrollment for all who want to participate. The top goals of the lupus research alliance public policy program focus mainly on funding for lupus research that will lead to better treatments and eliminate racial disparities in healthcare. Goals include: increasing federal funding for lupus research at the national institutes of health (nih), and specifically the national institute for allergy & infections disease (niaid) and national institute for arthritis & musculoskeletal disorders (niams). Additionally, lra advocates for lupus research through the department of defense (dod); supporting the lra's partnership with the fda, the lupus accelerating breakthroughs consortium (lupus abc); and ensuring the patient voice is incorporated in the drug development process. Volunteers across the country help amplify these outreach efforts.through the lupus research alliance ongoing public policy program efforts, significant funding for lupus research has been obtained under the department of defense (dod) congressionally directed medical research programs (cdmrp) operated by the army medical research and materiel command. Given the high demand for new research alongside the rising numbers of women treated at military health facilities as well as the link between post-traumatic stress disorder (ptsd) and the development of an autoimmunedisease, the lupus research alliance has worked to convince congress to increase its investment and provide $15 million for the lupus research program in the congressionally directed medical research programs operated under the defense health program in the defense appropriations bill. This additional investment is critical for discoveries that can make a difference in patients' ability to be the best version of themselves. The lra led the push for the creation of the lupus research program, which was first funded with $5 million in 2017 and increased to $10 million per year in 2020. Lra leadership, our advocates, and allied members of congress are working to advance research priorities like this that are critical to the lupus research alliance and all people impacted by lupus.in 2024, as the threat of cuts to health research funding became more pronounced, the lupus research alliance intensified its advocacy to protect and expand support for lupus research. Lra's primary advocacy push centered on encouraging constituents to engage with their house legislators during the august congressional recess. To support this effort, lra launched a webpage with resources to help advocates locate their legislators and identify local town halls and events. Additionally, staff held a virtual office hour session to answer questions and help advocates prepare to share their stories and emphasize the importance of research funding.ongoing advocacy focuses on ensuring legislation that secures the federal funding support necessary to afford investigators the resources to follow through with research discoveries that will improve the understanding of and treatment for lupus. Each spring, lupus research advocates meet with members of congress and their staff to describe their personal lupus journey and how the disease has affected their life, and to request specific policies that will move lupus research forward. The goal is to increase awareness of lupus and the impact it has on people's daily lives to members of congress and to request their support for increased funding for lupus research from federal programs such as the nih and cdmrp.