Collaborators from six institutions representing seven specialties met in Miami on March 2-3, 2009 for a joint purpose – to initiate a study to elucidate a rare disorder known as thrombotic storm. The purpose of this study is to further characterize patients with ‘thrombotic storm’ syndromes (including patients with catastrophic antiphospholipid antibody syndrome), track and study what happens to these patients over time, use detailed family history information to identify any potentially inherited patterns in the families of these patients, and to identify genetic factors that contribute to this rare, but extremely serious syndrome.

What makes this particular task so challenging is that thrombotic storm is presently not a well defined disorder, and, as such, is often overlooked. This can have dire consequences, as this condition is frequently lethal if not treated quickly and aggressively. The first charge of this unique group was to capitalize on its medical diversity to shape the definition of thrombotic storm. This was done by utilizing presentations of previous and new case data representative of the specialties. The end result was a new, more complete, perspective of the disorder. A review paper will be written utilizing available cases and group consensus from the meeting.

In addition to defining the disorder, investigators also discussed the most effective strategies to promote the study, raise awareness of thrombotic storm, and recruit these incredibly rare cases to the study.