The use of registries and on-site databases serve as a platform to stimulate discovery and help sarcoidosis researchers better understand the clinical course of the disease. FSR is asking the research community to help collect information on all clinically/investigator reported patient databases and registries. This can include an informal running list of patients that a physician might have on an excel spreadsheet to an official multicenter patient registry housed in an EDC. The registry does not have to be IRB approved and FSR does not require access to the registry. While we are not solely focusing on sarcoidosis –specific registries, we seek to capture information about databases that actively incorporate sarcoidosis in its data collection.
Please fill out the below form with more information about registries you take part in.