When news first broke about the possible link between Nephrogenic Systemic Fibrosis (NSF) and gadolinium-based contrast agents used in MRIs, it was certainly alarming. But not much was known about it aside from the alleged correlation.
So after the first cases of NSF were identified, the Centers for Disease Control and Prevention (CDC) worked with doctors from the University of California in San Francisco to investigate the disorder. The work has since moved to Yale University where Dr. Shawn Cowper is in charge of confirming and investigating new cases of NSF.
The NSF Registry—the official project name for the work Dr. Cowper is heading up—aims to collect and organize information about NSF patients globally. The information is collected in order to help identify factors that may be related to or causative of NSF. Additionally, the NSF Registry will collect information on NSF treatments—successes and failures—in order to determine effective therapies and to help design future medication/therapy trials.
Anyone who has been afflicted with NSF or NFD should have their doctor contact Dr. Cowper at . For more information, visit the NSF Registry website: icnfdr.org.