DATA USE AGREEMENT ALPHA-1 CLINICAL RESOURCE CENTER RESEARCH REGISTRY

The agreement defines the confidentiality requirements of the relevant legal authority, security safeguards, and the Alpha-1 Clinical Resource Center (CRC) Research Registry’s data use policies and procedures. The Data Use Agreement (DUA) serves as both a means of informing data users of these requirements and a means of obtaining their agreement to abide by these requirements.

I understand and agree that my authorization to use the Informatics for Integrating Biology and the Bedside (i2b2) tools is restricted to research purposes and that I may not use the i2b2 tools under this Data Use Agreement for patient care. My use of the i2b2 tools as authorized under this Data Use Agreement for any patient care purposes is expressly prohibited.

I understand that only aggregate numbers of patients satisfying any given data query will be provided by the i2b2 tools.

I understand that all searches executed by the i2b2 tools and within the Clinical Data Warehouse (CDW) are recorded and will be examined as part of routine compliance audits. My identity for any such request is recorded along with information related to each search executed.

I agree to restrict individual queries to legitimate research topics.

I agree that any queries of the CDW or the i2b2 tools will specifically be targeted toward the minimum necessary data to accomplish the goals of my research.

I understand that the data retrieved using the i2b2 tools or the CDW may not be used to identify or contact any individual or to attempt to learn the identity of any household, family, person, establishment, or sampling unit included in these data.

I understand and agree that any effort to determine the identity of any patient, or to use any data obtained from the CDW for any purpose other than indicated above, is prohibited.

I understand that any violation of this agreement may result in suspension or termination of my rights to access the CDW, the i2b2 tools, or any element, service, function, capability, or component thereof.