Also high on the soon-to-do list is to establish a decision tree of risk stratification, which is important for treatment and critical for clinical trial design. This goes to the very definition of APS. “When we started working with this syndrome 25 years ago, we thought the most prominent features were thrombosis in the lupus setting or problems during pregnancy,” says Dr. Khamashta, and to this day, in most clinics, this criteria for diagnosing APS remains in place. “But my colleagues and I are aware that by doing this, we are limiting ourselves to only clear-cut syndrome, completely ignoring other likely APS patients who may exhibit any of ten different disease manifestations.” Neurologic dysfunctions of seizure disorders or early-onset dementia may be a sign of APS, and so might valve problems. “A cardiologist may go ahead and do a valve replacement, but the real problem was sticky blood from APS. Yet, currently, you would not categorize that person as APS because of lack of evidence for thrombosis,” Dr. Khamashta notes. Current diagnostic criteria are simply not capturing the patients required to effectively treat the disease, or to populate a comprehensive clinical trial program.
Thanks to APS ACTION, these issues will soon be directly addressed. For now, the executive committee is in motion, coordinating the aims and activities of the APS ACTION subcommittees, with the short-term goal of establishing organizational structure. These components are slated to be in place, and ready for final review at EULAR 2011.
Neil Canavan is a journalist based in New York.
References
- Erkan D, Derksen R, Levy R, et al. Antiphospholipid syndrome clinical research task force report. Lupus. 2011; 20:219-224.
- Erkan D, Harrison MJ, Levy R, et al. Aspirin for primary thrombosis prevention in the antiphospholipid syndrome: A randomized, double-blind, placebo-controlled trial in asymptomatic antiphospholipid antibody-positive individuals. Arthritis Rheum. 2007;56:2382-2391.