International summit held to stimulate collaborative clinical research on antiphospholipid syndrome

November 2, 2010

Antiphospholipid Syndrome (APS) is a condition that may be responsible for up to one-third of strokes in people under age 50, up to one-fifth of all cases of blood clots in large veins, and one-quarter of recurrent miscarriages. Nonetheless, relatively few randomized clinical trials have been conducted involving people with APS, and those completed have included small numbers of participants.

To stimulate an international discussion on this topic, the APS Clinical Research Task Force is hosting a summit titled, "Breaking Out of the Box," in Miami from Nov. 2-4, 2010. The task force, co-chaired by Hospital for Special Surgery physician-scientists Doruk Erkan, M.D., and Michael D. Lockshin, M.D., was formed as a result of the 13th International Congress on Antiphospholipid Antibodies in April 2010.

The two dozen summit attendees will include experts in the field of APS research from around the world, including Australia, Brazil, Italy, the Netherlands, the United Kingdom and the United States.

"APS research has not progressed substantially over the past 25 years, after researchers developed a simple blood test to identify the antibodies," said Dr. Lockshin, director of the Barbara Volcker Center for Women and Rheumatic Disease at Hospital for Special Surgery in New York City. "As a result, we are gathering rigorous thinkers to identify critical APS research questions and establish the process for moving forward in a coordinated, strategic international effort."

APS involves the formation of abnormal in arteries and veins, which puts people at risk for stroke and . Blood clots form because the immune system mistakenly produces antibodies against phospholipid-binding plasma proteins (aPL).

APS can be diagnosed through repeated blood testing. While no cure exists and the cause is still unclear, treatment includes long-term blood thinning to prevent clots from forming. This condition can occur in conjunction with other , such as systemic lupus erythematosus and rheumatoid arthritis.

Several major issues have slowed the progress of APS clinical research, such as the fact that there are few standardized tests to detect the antiphospholipid antibodies, study participants have a range of symptoms, the biology underlying the condition is not completely understood, and smaller efforts have not recruited enough study participants.

"There is an urgent need for a true international collaborative approach to design and conduct large-scale involving people who have aPL," said Dr. Erkan, clinical co-director of the Mary Kirkland Center for Lupus Care at Hospital for Special Surgery. "At this summit, we hope to stimulate dialogue about this condition and formulate a solid research question from which to generate future clinical trials that are feasible, interesting and relevant."

The summit will include presentations about transforming and globalizing APS research, lessons learned from APS research registries, and several group brainstorming sessions for identifying, refining and finalizing research questions. Scientists will conclude by setting a timeline for critical tasks to complete in order to proceed with clinical studies.

The conclusions of the APS Clinical Research Task Force and the preliminary outcomes from the Miami summit will be presented at the upcoming American College of Rheumatology annual scientific meeting in Atlanta, in poster session A on Nov. 8 from 9 a.m.-11 a.m. as Abstract #6, Antiphospholipid Syndrome (APS) Clinical Research Task Force (CRTF) Report.

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