Record-level data from the Foundation for Sarcoidosis Patient Registry (FSR-S.A.R.C.) must be approved by the FSR. To uniformly address the requests and ensure that we meet privacy standards, FSR has developed a Data Application and Confidentiality-Usage Agreement, which includes our data access and publication policy. We anticipate that the review process for data requests will take approximately four to eight weeks after receipt of a complete data application. If a data request represents a significant time commitment to fulfill, we will advise you of our proposed timeline and any potential costs to address your request.
The guidelines to establish the process for investigators to access registry data were reviewed and approved by FSR. Before FSR Patient Registry data can be released, you must complete this application. Once this application is reviewed, you will be sent the Confidentiality-Usage Agreement to complete and sign.