Participate in Studies

The Churg-Strauss Syndrome Association encourages patients to consider participating in research to help further an understanding of CSS/EGPA. There are over 6,000 rare diseases and funding is competitive, so an enthusiastic patient population can make a difference in both the design and the funding of clinical research. Knowledge gained from a better understanding of CSS may be useful in furthering an understanding of the vasculitic process in any of the vasculitides and an understanding of the role of the eosinophil may help with other hypereosinophilic disorders as well as with the allergic response in general.

The National Institute of Health has a very good article entitled “NIH Clinical Research Trials and You”, which lays out the basics of participating in clinical trials and answers many unasked questions.

The goal of clinical trials is to determine if a new test or treatment works and is safe. Clinical trials can also look at other aspects of care, such as improving the quality of life for people with chronic illnesses.

People participate in clinical trials for a variety of reasons. Healthy volunteers say they participate to help others and to contribute to moving science forward. Participants with an illness or disease also participate to help others, but also to possibly receive the newest treatment and to have the additional care and attention from the clinical trial staff. Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for others in the future. The National Institutes of Health has developed extensive guidelines to help patients and their families make informed decisions about participating in research. In addition, there is an inspirational section with personal stories from patients and researchers who have been involved in clinical trials. Visit here.   There is also a very important section that informs patients about how to find clinical trials nationwide and worldwide. Visit here.   At the site linked to on the NIH website, one can search for trials by typing in key words. Typing in “Churg Strauss Syndrome” shows 19 results, while there were 11 result for eosniophilic pneumonia, and 15 results for rituximab and vasculitis.   Elsewhere in the world, the French Vasculitis Study Group and EUVAS organized and contributed to clinical trials related to vasculitis. There is a great spirit of cooperation and coordination in conducting worldwide vasculitis research which has proven beneficial to this rare disease population.   Canvasc keeps an updated listing of research opportunities around the world. In addition to research into vasculitis, research about the role eosinophils play in disease pathogenesis may help researchers gain a better understanding of CSS.    The CURED Foundation, a relatively new organization founded in 2003, devotes 100% of its profits to eosinophilic research.
The International Eosinophil Society, Inc. (IES) was established to bring together scientists around the world who are engaged in research in the field of Eosinophil Biology and Eosinophil Disorders with a view to facilitating exchange of ideas and information about this fascinating inflammatory cell type and its role in diseases.
The American Partnership for Eosinophilic Disorders lists and funds research.

Finally, patients are once again urged to register for the VCRC Patient Registry.

The CSSA views the creation of a registry for patients with Churg-Strauss Syndrome to be of the utmost importance in facilitating research into this rare disease. The CSSA urges all CSS/EGPA patients to register and has provided a direct link to the VCRC patient registry. View here.