Description of Collaborative Activity: |
Beginning January 1, 2020, through an agreement between the National Institutes of Health (NIH) and the Centers for Disease Control (CDC) National Center for Health Statistics, (NCHS), NIH began reimbursing the NCHS National Death Index (NDI) for the costs of NIH-supported investigators to link their research databases with the NDI for the research aims supported by the NIH. "NIH-supported investigators" refers to extramural investigators actively funded by the NIH, contract investigators working under an active contract with the NIH, and intramural researchers employed by the NIH. These NIH-supported investigators can link their research data to the National Death Index (NDI) at no cost to the NIH supported investigator. NIH-supported investigators will continue to submit applications for NDI linkage as per current NDI procedures, including NDI review and approval. This agreement applies only to NIH-supported investigators who are actively funded by the NIH to conduct research that requires NDI linkage. To be covered under this agreement, the NIH-supported investigator must be the owner or steward of the research data to be linked to the NDI datafile, and subject to limitations in linkages as identified in the agreement. As a part of the NIH/NCHS agreement, NCHS will be implementing an enhanced online application and will increase the frequency of NDI releases to quarterly. NDI allows fully deidentified (public access) research datasets with NDI-linked data to be shared without further NDI approval. Potentially re-identifiable datasets also may be shared without further NDI approval provided the research dataset is not transferred from one investigator to another but instead shared via a data enclave provided that the investigator obtained approval in the original NDI application to share the data via an enclave. An investigator also may share potentially re-identifiable NDI-linked research datasets with a data repository without further NDI approval provided the data repository shares the dataset on behalf of the investigator bound to the same constraints as the investigator (i.e., shared only if the dataset is fully-deidentified or shared only via a data enclave if potentially re-identifiable). During the period of this agreement, NDI will attempt to negotiate with the 57 vital registration jurisdictions to allow further data sharing flexibility without NDI approval. |
