A meeting of key stakeholders from the federal government, industry, and academia will be discussing pediatric rheumatic drug treatments and a consolidated adverse events registry.
Lupus Educational Curriculum Developed to Address Diagnosis Challenges
A new medical education curriculum and other materials to help current and future medical professionals make early diagnosis of lupus, and to better provide treatment and disease management, have been unveiled by representatives of The Lupus Initiative (TLI) during a presentation on May 16 in Washington, DC. TLI is led by the American College of Rheumatology in partnership with the U.S. Department of Health and Human Services’ Office on Women’s Health and Office of Minority Health and the U.S. Surgeon General. The initiative was established in response to advocacy efforts led by the Lupus Foundation of America and other groups to increase medical professional knowledge about lupus.
The Lupus Initiative provides medical professionals, educators and students with easy-to-use educational resources to improve diagnosis and treatment of lupus among populations that are disproportionately affected by the disease. Senior staff members of the Lupus Foundation of America national office and several members of the Foundation’s Medical-Scientific Advisory Council (MSAC) serve on TLI’s consortium, helping guide program development and offering input on strategy and priorities. More information about TLI is available online at thelupusintiative.org.
“Our research has shown that, on average, individuals with lupus suffer symptoms for four or more years and visit three or more doctors before they receive a diagnosis of lupus,” said Sandra C. Raymond, President and CEO of the Lupus Foundation of America. “I’m pleased to see this collaborative effort among advocacy groups, researchers, physicians and leaders in public health and government to provide critical tools that will help reduce the time to diagnosis and improve medical care for people with lupus.”
Since 2005, the Lupus Foundation of America has worked to increase funding for health professional education. These efforts led to the introduction of landmark legislation, called the Lupus REACH (Research, Education, Awareness, Communications and Healthcare) Amendments Act, to strengthen federal programs that identify the causes and cure for lupus, improve lupus data collection and epidemiology, and enhance public and health professional awareness and understanding of lupus. Many of the bill’s provisions subsequently were implemented through non-legislative advocacy efforts led by the Foundation.
The curriculum and other online resources are designed to empower medical professionals to recognize signs and symptoms of lupus and make appropriate referrals, as well provide culturally competent and patient-centered care. The curriculum includes presentation slides, interactive case studies, traditional case studies and a video reference library to better prepare future doctors to identity and manage cases of lupus. Also included are free continuing medical education (CME) and continuing education (CE) programs for health professionals and resources for patients in English and Spanish.
Foundation staff members who serve on the Consortium are: Leslie Hanrahan,
Vice President for Education and Research; Dario Dieguez, Jr., Ph.D., Senior Research Program Manager and Grants Administrator; and Jenny Palter, Director of Publications and Editor of Lupus Now® Magazine.
Members of the Foundation’s MSAC who serve on the Consortium are: Graciela S. Alarcón, M.D., MPH, Emeritus Chair, Jane Knight Lowe Chair of Medicine in Rheumatology at the University of Alabama at Birmingham; Cynthia Aranow, M.D., Co-Director, Clinical Trials Unit of the Center for Autoimmune and Musculoskeletal Disease, The Feinstein Institute for Medical Research; Stacy Ardoin, M.D., MHS, Assistant Professor Clinical Medicine at Ohio State University; S. Sam Lim, M.D., MPH, Associate Professor of Medicine, Emory University School of Medicine; Brad H. Rovin, M.D., Professor of Medicine and Pathology at The Ohio State University College of Medicine; Tammy Utset, M.D., MPH, Associate Professor of Medicine at the University of Chicago Medicine; and David Wofsy, M.D., Chief, Division of Rheumatology, at San Francisco’s Veterans Administration Medical Center.
The U.S. Department of Defense (DOD) Medical Research Program announces two new lupus research grant awards, bringing the total DoD funds to date for support of lupus research to $14 million.