As research advances the understanding of lupus, patients will need to know how findings might change a prognosis or possibly alter the disease course. Here’s the place to find tips and tools to stay up to date on the latest information from the laboratories, physicians, clinical trial networks, medical journals, and other outlets that investigate this autoimmune disease.

Skills to Cultivate

Think of educating yourself about lupus as an empowerment skill—one of several that people with a chronic disease consistently find make a big difference in their lives. Other valuable empowerments skills include the ability to:

• Pace yourself, a quality that has to do with knowing your limits.
• Communicate your needs to those who care for you.
• Practice patience to ride out the trying times.
• Organize your medical records and visits to physicians.
• Prioritize your responsibilities in life (rest, exercise, work, family).
• Cultivate a sense of humor to help you through the rough spots.

Knowledge Is Power

Lupus research is on the cusp of explosive growth. As with any disorder—especially a complex one like lupus that tends to show up in different parts of the body—it’s smart for patients and their families to stay abreast of research developments. The goal: to grasp enough to know how findings might affect you.

Researchers around the world are studying lupus. To explore their findings, search PubMED.org a National Institutes of Health (NIH) site that compiles biomedical literature citations and abstracts.

On the PubMED.org site, try searching such general terms as lupus, systemic lupus erythematosus, and discoid lupus, as well as more specific ones for a lupus complication (lupus nephritis, lupus central nervous system, lupus anemia, lupus ophthalmology, lupus pregnancy).

You can also add the phrase clinical trial to the search terms. Doing this tends to generate more accessible, easy-to-read abstracts. For example, a PubMED.org search for lupus nephritis clinical trial resulted in more than 230 citations. This was one of them:

Houssiau FA, Vasconcelos C, D'Cruz D, et al. Early response to immunosuppressive therapy predicts good renal outcome in lupus nephritis: lessons from long-term follow-up of patients in the Euro-Lupus Nephritis Trial. Arthritis Rheum. 2004;50(12):3934-40.

Typically, PubMED provides abstracts but not full text stories. While this is hardly ideal, the abstract does usually capture the essence of the study’s finding. If you want to see the whole article, try getting a copy at a university medical library or ordering the relevant journal issue online (there’s usually a link from the abstract).

While it’s not possible to search for LRI-funded research citations specifically on PubMED, we’ve done this work for you. For a full listing and links, see Round-Up of LRI Research Papers.

Clinical Trials

Patients can help to actually advance lupus science—and simultaneously help themselves—by joining in a clinical trial. Many questions about the benefits and risks of participating are answered in the LRI Patient Resource Guide FAQ Concerning Clinical Trials.

Government and industry sources provide searchable databases on clinical trials that patients can join. More »

Stay Focused

Even with the tools recommended here, searching for the latest laboratory and clinical research developments in lupus easily can become overwhelming. Tried and tested websites are listed in Links.

Additionally, even advanced immunologists need to pause and ponder when it comes to understanding a complex autoimmune disorder. For a better handle on the terms commonly used in lupus research, see Science Made Simple.

LRI gratefully acknowledges the contribution of Kathleen A. Arntsen in developing patient empowerment materials.