Lupus Federal Working Group

 

The draft Action Plan for Lupus Research is available for comment through September 11, 2015. For more information about the draft action plan, and for instructions on how to submit your comments, please see the NIH Guide Notice NOT-AR-15-018 Ė Request for Information (RFI) on the Action Plan For Lupus Research.

 

Updated March 9, 2015

To facilitate collaboration among the NIH Institutes, other Federal agencies, voluntary and professional organizations, and industry with an interest in lupus, the NIH established the Lupus Federal Working Group (LFWG) in 2003. The LFWG is led by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), the lead federal agency for research on lupus. It also includes representatives from all relevant Department of Health and Human Services (HHS) agencies and other Federal departments with an interest in lupus. This includes the National Institute of Allergy and Infectious Diseases; the National Institute of Neurological Disorders and Stroke; the National Institute of Diabetes and Digestive and Kidney Diseases; the National Heart, Lung and Blood Institute; the National Center for Complementary and Integrative Health; the National Eye Institute; the Eunice Kennedy Shriver National Institute of Child Health and Human Development; the National Institute of Environmental Health Sciences; the National Institute of Dental and Craniofacial Research; the National Institute on Minority Health and Health Disparities; the Office of Research on Womenís Health and other agencies of the Federal government including the HHS Office on Womenís Health, the U.S. Food and Drug Administration, the Health Resources and Services Administration, the Agency for Healthcare Research and Quality, and the Centers for Disease Control and Prevention. Voluntary organizations and representatives from the private sector also attend and participate in the meetings of the LFWG.

Information for Researchers

The fiscal year 2005 House Appropriations Committee Report Language directed the NIH to develop a plan to guide the nation's investment in lupus research. To identify the opportunities, priorities and needs in lupus research that should be considered for inclusion in the research plan, a panel/workshop consisting of scientific experts in the field of lupus convened for two days of presentations and discussion. The key points of their conclusions are reported in The Future Directions of Lupus Research, which was released in 2007.

Through the individual and collaborative activities of researchers, clinicians, and stakeholders in the lupus community, there have been significant advances in the understanding of disease mechanisms, evolution of new partnerships, and advances in drug discovery and development that have fostered candidate therapeutics, FDA approval of a new therapeutic, and improvements in the care and quality of life for affected individuals. At this time, there are new challenges and opportunities that would benefit from an assessment of progress and current needs. As requested by the Congressional Lupus Caucus, the NIAMS is leading an effort to evaluate progress on The Future Directions of Lupus Research and to develop a coordinated action plan for future lupus research.

The action plan will be organized to mirror current understanding of the disease and to reflect scientific opportunities for advancement. The plan supplements and enhances ongoing activities of the NIH, including the activities in the NIAMS' Long Range Plan (2015 — 2019).