Register for the Patient Registry at the VCRC
The Churg Strauss Syndrome Association encourages all patients with Churg Strauss Syndrome to register for the free Patient Registry at the Vasculitis Clinical Research Consortium. The registry form is very short and takes two minutes to complete. The registry is open to patients from around the world. So far over 208 CSS patients have registered. Registering informs researchers that CSS patients are interested and supportive of research. This may help spur new research into the disease. Registering for the Patient Registry simply allows the VCRC to contact patients about clinical trials. There is absolutely no obligation to participate, although participating in a trial can be quite satisfying. There are potential new CSS studies being discussed and quite possibly a large committed patient population could have an effect on generating more interest in studying this disease.
Other VCRC news is that the protocol for the ongoing Longitudinal Study for CSS has been changed. Now, instead of having to be seen monthly at one of the participating centers, patients are seen every three months, or in some cases, even annually, for a complete clinical visit. This change should make it much easier for patients who live some distance from the centers to participate. Learn more about this study