A year of historic lupus firsts generated during 2011 contributed to advances in the science and medicine of lupus, improved lupus awareness, and heightened understanding of the disease and its impact, according to the Lupus Foundation of America (LFA).
A year of historic lupus firsts generated during 2011 contributed to advances in the science and medicine of lupus, improved lupus awareness, and heightened understanding of the disease and its impact, according to the Lupus Foundation of America (LFA). These firsts are the following:
1. First lupus treatment approved in more than 50 years. The FDA approved Benlysta, the first drug developed specifically to treat patients with lupus and the first entry in what is expected to become an arsenal of new, safe, effective, and tolerable treatments for this condition.
2. Lupus flare defined, published. The journal LUPUS published the first-ever global definition of a lupus flare, the Lupus Foundation of America Flare Definition, which was the result of a 4-year worldwide initiative led by the LFA. The new definition provides clinicians and investigators with a valuable tool for evaluating the effectiveness of potential new treatments.
3. Analysis takes tough look at treatment trials. The LFA released early data from the first-ever study to use pooled data from industry-sponsored lupus treatment trials. The findings showed that background medications taken by persons enrolled in these trials have a great impact on trial outcomes. Known as the LFA Collective Data Analysis Initiative, this effort is intended to provide insight and identify trends from previous lupus clinical trials and improve the design of future trials of new lupus therapies.
4. Persons unite to further lupus clinical studies. The LFA Center for Clinical Trials Education served as a resource for more than 20,000 persons interested in lupus clinical trials and helped connect potential volunteers with studies in their areas.
5. Research reveals that more persons have lupus than previously estimated. Early data from the Georgia Lupus Registry indicated a higher overall prevalence of lupus and a significantly higher incidence of lupus among black women than has been reported in the scientific literature.
6. Lupus flares infrequent during pregnancy for most women with stable lupus. Findings from a large study indicating that most women with stable lupus or only mildly active disease experience infrequent flares during their pregnancies and deliver healthy babies are significant because lupus develops mostly in young women of childbearing age.
7. Web-based community captures national spotlight. The LFA launched Lupus Voices Across America, a new Web-based community for persons with lupus to share what they want the public to understand about lupus.
8. Research studies help advance the science and medicine of lupus. In 2011, the LFA supported lupus research studies in critical areas, including cutaneous lupus, pediatric lupus, stem cell transplantation, and neuropsychiatric lupus.
9. Lupus information disseminated. The LFA and its national network assisted about 200,000 persons by providing information about lupus, referrals to physicians, and support services.
10. LFA-funded research presented. Data from several studies funded by the LFA’s National Research Program were presented during the 2011 American College of Rheumatology Scientific Meeting, including research on lupus in men, pediatric lupus, quality-of-life issues, lupus diagnostic criteria, lupus biomarkers, and neuropsychiatric lupus.
For more information about lupus, visit the LFA Web site at http://www.lupus.org. Or, contact the organization at Lupus Foundation of America, Inc, 2000 L Street NW, Suite 410, Washington, DC 20036; telephone: (202) 349-1155; fax: (202) 349-1156.