The lupus clinical research team at the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) hosted its second annual D.C. Lupus Consortium (DCLC) meeting on October 27th, 2017. They welcomed over 30 participants, including lupus researchers and advocates from the Washington, D.C. area to the NIH Clinical Center. The consortium aims to foster collaborations among lupus researchers in the NIH Intramural Research Program and partners in the regional academic, private practice and patient advocacy communities.
Robert Carter, M.D., deputy director at NIAMS, kicked off the meeting by stating the importance of the DCLC’s inclusive and collaborative approach to advancing lupus research. Attendees received updates on lupus protocols from NIAMS researchers John O’Shea, M.D., scientific director, Richard Siegel, M.D., Ph.D., clinical director, Mariana Kaplan, M.D., senior investigator, and Sarfaraz Hasni, M.D., staff clinician and director of the Lupus Clinical Research Program. They discussed recent advances in lupus-related basic and clinical research at NIH and the growing number of clinical research efforts such as the lupus natural history and pathogenesis protocol, which serves as a resource for better understanding and characterizing lupus. Other members from the Lupus Clinical Trials Unit including Michael Davis, MSN, CRNP, Jun Chu, MSN, CRNP, Isabel Ochoa and Jamillah Bynum, updated attendees on the process and protocols for patient referral, care and discharge for lupus clinical trials.
Speakers also included Laura Lewandowski, M.D. and Sarthak Gupta, M.D., both conducting research in the NIAMS Systemic Autoimmunity Branch. Dr. Lewandowski presented on her current clinical and translational research in pediatric lupus, and Dr. Gupta discussed the STOP LUPUS study evaluating omalizumab therapy in lupus. Patricia Coffey of the NIH Clinical Center brought the audience up-to-date on recent improvements in the patient and referring physician electronic portal known as FollowMyHealth®, and Randall Keyser, Ph.D., clinical investigator in the department of rehabilitation medicine at the NIH Clinical Center, talked about research on the impact of exercise in lupus. The meeting concluded with a participant-led dialogue on patient referrals, information sharing on social media, minorities in research, and resources to better navigate and understand clinical trials.
The DCLC will continue to provide a platform for resource sharing, information exchange and patient referrals for clinical trials. The consortium will meet regularly with the hope of developing an integrated clinical trials network that will benefit the region’s lupus patients and researchers. Those interested in participating should contact Dr. Hasni directly at hasnisa@mail.nih.gov.