Collaborators Publish First Paper
Thrombotic storm collaborators have published their first paper, which outlines the diagnostic criteria for this extremely rare disorder. This research will finally give physicians the tools they need to rapidly recognize and treat this extremely serious condition, which is often lethal if not detected and treated quickly. Ultimately, the authors hope this paper will bring greater attention to the syndrome, which they believe is frequently under- or misdiagnosed.
This unique group of collaborators is comprised of seven medical specialties including pediatric and adult hematology, rheumatology, genetics, neurology, pediatrics, and obstetrics. The group’s diverse medical expertise enables a comprehensive approach to the disorder, which is seen in patients in each of their medical specialties. The paper titled, “Thrombotic Storm Revisited: Preliminary Diagnostic Criteria Suggested by the Thrombotic Storm Study Group,” was published in April The American Journal of Medicine. In it, researchers describe 10 new cases they believe represent the thrombotic storm phenotype, and support the diagnostic criteria proposed.
This group of collaborators will meet again at the Hilton Bentley on Miami Beach on May 23, 2011, for the 3rd Annual International Thrombotic Storm Collaborator Meeting hosted by Drs. Jeffery M. Vance and Margaret A. Pericak-Vance. For the past three years, the investigators from around the United States and Canada have gathered together as part of a study funded by the John P. Hussman Foundation. The purpose of the thrombotic storm study is to further refine the extreme clinical phenotypic definition of thrombotic storm, determine how thrombotic storm impacts a person over time (i.e. the natural history of the disorder), and identify potential gene mutations that place these individuals at risk, so prevention and treatment strategies can be developed and applied. At the meeting, collaborators evaluate new cases, review and analyze data, and strategize. This year the group hopes to review the results of a genetic analysis completed at the end of April. This may shed the first light on genes associated with thrombotic storm.
In addition to shedding light on thrombotic storm, it is the hope that identifying new genes involved in the thrombotic process will provide new insights into thrombotic disease in general which strikes so many. In America, 600,000-900,000 people develop blood clots each year.
To view Thrombotic Storm Revisited: Preliminary Diagnostic Criteria Suggested by the Thrombotic Storm Study Group CLICK HERE.