Deep Vein Thrombosis (DVT) Support Group

This information is taken from the NATT website but I thought it was worth sharing here on our board. There is a study taken place which is seeking volunteer:

"a very small number of people who develop blood clots have a more serious and often life-threatening syndrome called Thrombotic Storm. People with Thrombic Storm experience more than one blood clot in a short period of time. These clots occur in different and sometimes unusual locations in the body. This very aggressive and serious form of blood clotting is often difficult to treat, and there is very little research or documentation of this disorder.

Although research on Thrombic Storm is still in nascent stages, scientists believe the disorder 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 (APS), a disorder that causes blood clots as well as pregnancy complications including miscarriages and preeclampsia. When Thrombic Storm is seen in patients with APS, the condition is referred to as ‘catastrophic Antiphospholipid Syndrome’, or catastrophic APS (CAPS).

These researchers are now turning their focus towards recruiting patients and raising awareness of the disorder. Researchers will track patients over time and use detailed data from family history information to identify any potentially inherited patterns in the families of patients with Thrombic Storm. This will help researchers identify genetic factors that may contribute to this syndrome, and aid in the search for ways to predict, prevent, and treat Thrombic Storm.

Individuals who were age 55 years or younger at the time they experienced two or more of the following may be eligible to participate:

- Two or more clots in a short period of time
- Clot(s) in an unusual location (e.g. not the leg or lung)
- Clots progressed, or the clots came back when not expected to
- The response to treatment did not go the way the doctor thought it should (e.g. there was a poor or unusual response to treatment)

For those who would like more information about the study, they may contact study staff at 877-740-7744 or via e-mail at MIHGTS@med.miami.edu. In addition, you may visit the following websites:

www.thromboticstorm.com

www.mihg.org

http://htc.medicine.duke.edu
Posted on 11/06/09, 08:11 am