thrombotic storm (A Catastrophic Thrombotic Event)Most patients who develop a blood clot in their vein (venous thromboembolism) have either a deep vein thrombosis (DVT), most commonly in their legs, or a blood clot in their lung (pulmonary embolism). A small number of people who develop blood clots have much more serious symptoms. They may have many clots that are life-threatening. In addition, one or more of these clots may also happen in unusual locations in the body. These patients may also be difficult to treat. This very aggressive and serious form of blood clotting has been referred to as 'thrombotic storm' (TS). TS may be associated with an existing condition or situation that predisposes a person to blood clots such as cancer, infections, or pregnancy. It has also been seen in patients with antiphospholipid syndrome or APS. In this situation, the condition is called 'catastrophic antiphospholipid syndrome', or catastrophic APS. Thrombotic storm has been seen in patients of all ages. The primary purpose of this study is to learn more about 'thrombotic storm' syndromes. Participants in the study are asked to provide family history information, answer questions about medical and environmental history, provide demographic information, and provide a blood sample. Participants are also asked to update this information yearly. Travel to the researcher is not required and there is no cost to the participant. In addition, participants are not paid to participate. Ultimately, we hope that data from this research will lead to improvements in prediction, diagnoses, prevention, and treatment of this serious disorder. Contact Information View our Thrombotic Storm brochure Related Links: |