The Lupus Action Plan, Explained


In this Q&A, Rheumatology Network speaks with Dr. Stephen Katz about the NIAMS Action Plan for Lupus Research.

In December, the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) published a new action plan for lupus research, a 41-page document that summarizes where we are and where we need to go in understanding this complex and variable autoimmune disease.

Between 300,000 and 1.5 million Americans have lupus, according to the Centers for Disease Control and Prevention. Advances in research have turned the disease from one that was often fatal to one that is largely a chronic disease today, but little is known about the underlying causes of lupus. According to the NIAMS, the process of developing a new action plan for studying lupus has raised four major questions:  Is lupus a single disease or a constellation of related conditions? How can new tools in genomics, genetics and imaging move the understanding of lupus forward? How can the research community facilitate the development of new treatments? And, how can the research, patient and physician communities come together to support lupus research?

Rheumatology Network reached out to Stephen Katz, M.D., Ph.D, the director of NIAMS, to discuss the state of lupus research and the goals of the new action plan.  

RN:  The previous action plan for lupus was published in 2007. What strides have been made in research since then?  

Dr. Katz:  We’ve learned a lot since the original plan was published. Genome-wide association studies, or GWAS, have helped to identify a number of genetic variants associated with lupus. In addition, we know much more about the role of microbes that live in and on our bodies - or the microbiome - in lupus and other autoimmune diseases. And, we have many new mobile and wearable health technologies that will allow researchers to monitor aspects of the environment and individual health behaviors, such as diet, to see what new connections can be made. We’ve also learned a tremendous amount about disease mechanisms all of which provides many opportunities for new research.  [[{"type":"media","view_mode":"media_crop","fid":"50774","attributes":{"alt":"Stephen Katz M.D., Ph.D.","class":"media-image media-image-right","id":"media_crop_7902760568120","media_crop_h":"0","media_crop_image_style":"-1","media_crop_instance":"6218","media_crop_rotate":"0","media_crop_scale_h":"0","media_crop_scale_w":"0","media_crop_w":"0","media_crop_x":"0","media_crop_y":"0","style":"font-size: 13.008px; line-height: 1.538em; float: right;","title":"Stephen Katz M.D., Ph.D.","typeof":"foaf:Image"}}]]

RN:  What new priorities does this action plan bring to the table?

Dr. Katz:  The plan provides a platform for researchers to work on. An important thing to know is that we are not trying to dictate what people should study, but to present many broad areas of potential research. The new plan highlights some of the opportunities, but investigators can pursue their own ideas as well.

RN:  If lupus is not just one condition, but many, how does that affect the approach to the disease, both in research and in treatment?

Dr. Katz:  If lupus represents a collection of related diseases, it will be important to determine whether these diseases have different causes and mechanisms that would require distinct treatment and prevention strategies.

The goal is to be able to understand why certain individuals are affected by lupus in different ways. Some people experience extensive kidney involvement and in others, the brain is primarily affected, or the lungs, or the skin. If we can understand the disease mechanisms at work in each individual, we can tailor treatment and prevention strategies to achieve better outcomes for patients.

RN:  What are the particular challenges of understanding lupus and of translating research from bench to bedside?

Dr. Katz:  There are a number of challenges. One that we have been particularly focused on is identifying new targets for drug development. New effective treatments are a tremendous need in lupus. Many of the existing medications have serious side effects and no medications have been approved for the treatment of lupus in children. The NIH Accelerating Medicines Partnership in lupus and rheumatoid arthritis is addressing this issue by bringing together high-level government, industry and non-profit foundation partners to identify new targets for therapy.

Training is another challenge. We need to excite people to become lupus researchers. We have many outstanding investigators in the field and they are wonderful role models for medical students and doctoral candidates interested in lupus research.

Finally, population studies are very important. We have a highly varied population in the United States and it is important to understand why populations are affected differently. Knowing this lead to more effective treatments.

RN:  Where are the most promising directions in lupus research?

Dr. Katz:  There are promising opportunities throughout the plan. I’ve touched on a few like genetics and functional genomics. New research tools will enable scientists to explore disease mechanisms and to follow patients in ways that have not been possible previously. I am excited that the plan lays out so many promising options.


For more information about the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Action Plan for Lupus Research, click here.


NIAMS has identified research opportunities across a broad spectrum of basic, translational and clinical research to facilitate the development of new diagnostics, treatments and strategies to prevent organ damage in lupus.

The action plan is organized into seven chapters:

o   Etiology and Prevention

o   Mechanisms of Disease

o   New Treatments and Interventions

o   Diagnosis and Clinical Care

o   Behavioral, Biopsychosocial and Health Services Research

o   Special Populations

o   Training and Collaborations












Helmick CG, Felson DT, Lawrence RC, et al. Estimates of the prevalence of arthritis and other rheumatic conditions in the United States: Part I. Arthritis Rheum Arthritis & Rheumatism. 2007;58(1):15-25. doi:10.1002/art.23177.

Lawrence RC, Felson DT, Helmick CG, et al. Estimates of the prevalence of arthritis and other rheumatic conditions in the United States: Part II. Arthritis Rheum Arthritis & Rheumatism. 2007;58(1):26-35. doi:10.1002/art.23176.

National Institute of Arthritis and Musculoskeletal and Skin Diseases. Action Plan for Lupus Research. December 22, 2015. Accessed July 26, 2016.

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