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.

Oliver Wendell Holmes’ formula for longevity: “Have a chronic disease and take care of it.”

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).

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.

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.

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.

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