Cerebral venous thrombosis (CVT) is a rare type of stroke that can cause headaches, vision loss, weakness, seizures and coma. It is most common in young women and causes 1/3 of strokes that occur around pregnancy. Among those affected, up to 15% are left dead or disabled, 25% cannot return to work, and over half have lasting issues with energy, thinking or mood.
As a rare disease, CVT is hard to study in large trials, and treatment decisions are based on clinician opinion. CVT is treated with strong blood thinners, but it is not clear which blood thinner is best or how long people should be treated. We are conducting a national study to determine the best way to treat CVT.
Collaborating with 18 other hospitals we will recruit patients from across the country. People living outside of major cities can participate in the study over video-conference and we will also hold forums to consult with patients and family members about lasting symptoms that affect their quality of life.
Our aim is to improve treatments for CVT, and better understand its long-term effects. We also want to continue to expand our video-conference network so that people with health issues will be able to access research treatments, regardless of where they live.