In response to a request from the Congressional Lupus Caucus, the National Institutes of Health (NIH) has released an Action Plan for Lupus Research. This report was a collaborative effort, led by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) on behalf of the NIH. It represents a synthesis of internal and external input on promising future research directions to improve the lives of people with lupus.
Systemic lupus erythematosus (SLE, or lupus) is an autoimmune disease in which the immune system mistakenly attacks its own organs, tissues, and cells. By the most conservative estimates, there are at least 322,000 Americans with definite or probable lupus, and recent independent surveys have suggested that as many as 1.5 million people in the U.S. have lupus. Women with the disease outnumber men nine to one. Lupus often strikes women in their prime, interfering with the ability to work, have or raise a family, or in some cases, even care for themselves.
Sixty years ago, about 50 percent of those with lupus died within five years of their diagnosis. Today, thanks to advances brought about by research, 97 percent of lupus patients are living five years after diagnosis, and 90 percent continue to survive after 10 years. The transformation of lupus from a disease with a high mortality rate to one that is chronic has led to an increased need for better therapies that can manage long-term symptoms.
The past two decades of research have yielded a wealth of new information and extraordinary growth in improving our understanding of lupus. While the Action Plan is not meant to be comprehensive, it captures the current state of the science, identifies many pressing needs and opportunities, and will help to propel the field forward. Basic, translational, and clinical research discoveries and emerging technologies will present additional opportunities to accelerate progress in lupus research and to improve quality of life for individuals with lupus.
In 2005, the House Appropriations Committee directed the NIH to develop a plan to guide the nation's investment in lupus research. In response, The Future Directions of Lupus Research was released in 2007. In July 2014, the Congressional Lupus Caucus requested that NIAMS, as the lead agency of the Lupus Federal Working Group, develop a new coordinated action plan for lupus research.
"We have made great strides in our understanding of lupus and its treatment since the publication of the 2007 report," noted NIAMS Director Stephen I. Katz, M.D., Ph.D. "Yet, much work remains to be done."
The Action Plan is organized around seven broad areas of scientific opportunity:
- Etiology and Prevention
- Mechanisms of Disease
- New Treatments and Interventions
- Diagnosis and Clinical Care
- Behavioral, Biopsychosocial and Health Services Research
- Special Populations
- Training and Collaborations
The plan was developed collaboratively among the NIH Institutes and Centers with an interest and investment in lupus research, with extensive input from the broader community of researchers, health care providers, patients, and the Lupus Federal Working Group. It highlights many opportunities to increase our understanding of lupus at the molecular, individual, and population levels, which ultimately should lead to safer and more effective treatments and, eventually, curative strategies. In addition, it will help to inform priority-setting processes among all lupus-related organizations — federal, private, and non-profit — and serve as a guide for lupus investigators.
The mission of the NIAMS, a part of the U.S. Department of Health and Human Services' National Institutes of Health, is to support research into the causes, treatment and prevention of arthritis and musculoskeletal and skin diseases; the training of basic and clinical scientists to carry out this research; and the dissemination of information on research progress in these diseases. For more information about the NIAMS, call the information clearinghouse at (301) 495-4484 or (877) 22-NIAMS (free call) or visit the NIAMS website at https://www.niams.nih.gov.