On May 17, 2019, the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) lupus clinical research team gathered for the upcoming 25th anniversary of the natural history of systemic lupus erythematosus (SLE) protocol at the annual D.C. Lupus Consortium (DCLC) meeting. “We are here to celebrate and recognize the patients, providers, researchers and advocates who have supported lupus research at the Clinical Center over the last 25 years,” said Robert Carter, M.D., acting director of NIAMS, during his welcoming address to over 175 guests in attendance. The meeting highlighted the progress in lupus clinical research made by Institutes across the NIH, specifically celebrating the success of the lupus natural history protocol over the last quarter century. The event featured testimonials from research participants, updates on current lupus studies at NIAMS and discussions on future topics to explore.
Following Dr. Carter’s introduction and overview of lupus research across the NIH, Sarfaraz Hasni, M.D., director of the NIAMS lupus clinical research program, provided details on the history and current studies stemming from the natural history protocol. James Balow, M.D., clinical director of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), discussed the evolution and impact of lupus nephritis research at NIH. John O’Shea, M.D., scientific director of the NIAMS intramural research program, and Mariana Kaplan, M.D., senior investigator and chief, NIAMS systemic autoimmunity branch, delivered updates on lupus research and protocols.
The meeting also included presentations on the efforts to raise awareness for lupus through social media by Tiffany Peterson, Carly Harrison, Christele Felix and Elizabeth SantaCruz, of the online health community chat group, #LupusChat; the relationships between researchers and advocacy groups by Steve Gibson, president and CEO of the Lupus Foundation of America; and a discussion about the impact of NIH research on patients by DCLC member, Donald Thomas, M.D. The audience heard from NIAMS lupus clinical research team members Laura Lewandowski, M.D., Sarthak Gupta, M.D. and Jun Bie Chu, M.S.N., C.R.N.P., on recent lupus research and the implementation of quality indicators for SLE patients at the NIH clinical center.
Additionally, NIAMS lupus clinical trials unit members, including Elaine Poncio, R.N., Yenealem Temesgen-Oyelakin, R.N., Isabel Ochoa and Michael Davis, M.S.N., C.R.N.P., conducted brief interviews with Grace, Eddie, Silvana and Gina, participants in the lupus natural history protocol. The interviews focused on the patients’ background of living with lupus and their experiences at NIH. The DCLC meeting concluded with a performance from the NIH’s Affordable Rock ‘n’ Roll Act band.
The DCLC aims to provide a platform for resource sharing, information exchange and patient referrals for clinical trials. The consortium will continue to meet regularly with the hope of increasing awareness about the importance of lupus research. Those interested in participating in lupus clinical research should contact Dr. Hasni directly at firstname.lastname@example.org.